Bennett Gamel: Blessed Little One

I did Pinterest before Pinterest was invented.

2012-02-22T19:01:00.000-08:00

Ok, this has nothing to do with Bennett or Cystic Fibrosis. But I couldn't help but share these pictures. They remind me of the stories I will one day tell my boys about growing up in the 20th century.

Yes, boys, growing up in the 20th century would seem quite archaic to you:
As a child, I recorded my favorite movies on VHS. In 5th grade, I used those super large 8" floppy disks and typed DOS commands on a black/green Mac computer in computer class. I owned a walkman and loved to listen to tapes of my favorite songs while writing the bus to school. In 8th grade, I learned to type on a typewriter. My family had one of those heavy bag phones, complete with a cord that we used in the car. I actually texted my friends using a beeper in high school (holla!). And I was made fun of for walking to class across campus while chatting on my cellular phone (because nobody did this at first).

So, this is just one more thing to add to the archaicness of the pre-I-now-can-do-everything-on-the-internet days...

The other day, while cleaning out a closet, I found "my binders"...the infamous binders. In college, I began gathering together magazine clippings of things I like into big binders. I labeled my binders by topic: entertaining, decorating, organizing, kid ideas, baby ideas, recipes, etc. Over time, I ended up gathering more than 8 binders of fun things I wanted to use in the future.

But, after several moves, including in and out of my first apartment and into my first home, I began to realize that I just couldn't keep collecting more ideas. And, honestly, I needed to start cutting down on how many binders I had. But it's hard to throw away great ideas! :)

After finding my binders again for the first time in two years the other day, I realized: I did Pinterest way before there was ever such a thing.

The really great thing is, as wonderful as these ideas I originally clipped out are, there are even more on this new Pinterest website which allows me to "clip" ideas and save them for later - all without having to add another physical binder! Ah, the magic of the internet: less physical paper!

So, goodbye binders! You were nice when I needed you - but now I can do all of this online! Thank goodness for the internet. It's hard to believe how life has changed technologically since I was a kid! I look forward to see what new things happen in the next 20 years. Although, I'm still waiting for that Back to the Future hoverboard to be invented!

Eating Update

2012-02-19T20:44:00.000-08:00

It hit me a few days ago that I haven't given an update in a while on how Bennett is doing these days. In fact, it hit me, because over the course of several days, numerous friends have asked me the same question: "How is Bennett doing with his eating?"

I honestly haven't thought much about his eating in a while because things have been relatively well and relatively poorly at the same time.

The good news is Bennett eats several meals per day and regularly communicates he *wants* to eat. He most often asks for "nomnies" which is his best way of saying "m&m's" (which apparently sounds much like the word "money" to him, hence a "nomney"). Bennett's favorite food is "ought-gogs" (hot dogs) ...especially with "etch-up" (ketchup) and a drink of "appul joo" (apple juice). Despite that he has favorite foods, he is fairly open to trying new foods, which is always pleasing for a mother of a toddler!

For these reasons, we feel like his eating is 100% better than it was a year ago. We are very thankful to all of the work done with him at the Feeding Clinic to get us to this place. We no longer utilize the Feeding Clinic protocol or force him to eat the foods we have predetermined for him. But we do use television for distraction and use verbal feedback and rewards to encourage him to stay focused on eating.

One of the greatest benefits to Bennett is his brother's appetite.
Bennett tends to want to eat when Oliver eats, especially when it comes to ice cream!
When Oliver is interested in a food, Bennett is at least willing to try it, which is wonderful.

Bennett still "pockets" his food, it seems forgetting he has food hidden within his cheeks. But we've found that if we ignore it, he will either eventually get distracted and eventually swallow it - or he will indicate he wants to simply spit it out. We don't make a big deal about either one.

The bad news is, while Bennett is eating, he isn't eating enough. Bennett is very thin. His GI doctor isn't concerned. But I am afraid his CF doctors may be alarmed when we see them next month. Bennett hasn't lost weight but also he hasn't gained. And, overall, he is skinner than he should be.

But our choice to increase his feeding tube is difficult as it may slow his process off eating orally. I have had to simply stop worrying about it and just wait to see what the doctors suggest at our CF appointment. I don't have alot of control in this area so I am trying to be patient.

My greatest desire is to see Bennett's eating skills continue to strengthen so that should we end up needing to put him on the feeding tube for longer amounts of time, these skills will not be totally lost. Bennett has been on the cusp of losing or not gaining oral eating skills over the last two years. So, the longer we can encourage him to eat by mouth, the better.

This picture just cracks me up.

The nice thing is Bennett has a sweet tooth. So, we often find ourselves encouraging him to eat the high-caloric, high fat foods by rewarding him with a high-caloric, high fat dessert. This works in our benefit: eat a bite of her french fry and you can have an M&M. :)

Bennett likes to go fishing in his chocolate ice cream for lost M&Ms and gummi bears.

Bennett is still fed through the g-tube at night. But he is given only eight ounces of formula at night. The main thing I want to continue to do is to protect Bennett's belief that eating is fun and enjoyable. I want to do this so that, should he not feel like eating, he may have a habit of eating food simply because it's social and enjoyable to do so. There is no better place to cultivate a love for food than our favorite local ice cream place, 3Spoons.

Such a silly boy!

Clearly, Bennett is eating and is enjoying it! We'll see what the docs have to say in a few weeks. For now, I'm delighted to see Bennett appreciate food. And I'm, quite frankly, delighted to not even be worried about it right now!

Bennett's Brigade Tshirts

2012-02-14T21:56:00.000-08:00

I am super excited about this year's Bennett's Brigade T-shirts! They were designed by our friend Melissa and we think she did a great job!

This year's t-shirt is for $15 ($5 from all adult shirts will go to the Cystic Fibrosis Foundation). However, anyone who donates $100 or more to Bennett's Brigade will get their tshirt free (so, if you're already donated $100, I'll be contacting you for your address)!

The t-shirts will be printed on the Gildan tshirt color called, "Antique Irish Green" with black and white ink on the front and white ink on the back.

The t-shirts come in Adult S, M, L and XL (let me know if you are interested in sizes XXL+). The shirts also come in Youth sizes XS (2-4), S (6-8), M (10-12) and L (14-16). Children's shirts will be printed on Gildan Irish Green.

Even though the CF Walk isn't until May 19, in order to get t-shirts ordered and mailed out in time, all orders must be received by April 19.

If anyone is interested in purchasing this year's Bennett's Brigade t-shirt, please email me at breckgamel at yahoo dot com with your size and address. I will give you an address of where to send a check.

If you aren't interested in buying this year's Bennett's Brigade t-shirt but want to attend the CF Walk this year, just plan to wear whatever irish green shirt you have! :)

Grandma's Got CF??

2012-02-11T19:44:00.000-08:00

"Grandma's Got CF?" This is the question my family has been asking each other since we heard this could be true.

Wait, could Bennett's 85 Year Old Great Grandmother Seriously Have Cystic Fibrosis??

You won't believe it but there is a very real possibility she does -
so much so, that her new Pulmonologist is a Cystic Fibrosis doctor...
that he has already ordered her the Vest...
that he has already placed her in the CF Registry...
that she's in the hospital right now doing a "tune-up" (what CFers call a hospitalization with a round of multiple IV antibiotics)...
that she's already cultured psuedomonas.

Here, before I go any further, let me explain some of the back story...

There is one thing I have never shared publicly about Bennett having Cystic Fibrosis. It's probably one of the most disappointing things for our family that has come out of this disease.

And it is this:

Bennett's maternal great grandmother (whom we call "Grandmom") has never held, hugged or kissed Bennett. And to do so would put his health at serious risk.

I honestly could have never dreamed something so unfortunate - for a great grandmother to never hold her great grandson - and for a great grandson to never be kissed by his great grandmother, even though both of them are alive and well.

Grandmom is the only living grandparent on my side of the family and has been for a very long time. My family, myself included, are very close to her and love her tremendously. So, it's beyond logical to me why something so ironic would happen to her and Bennett at nearly the exact same time, before either of them every met, forcing us to keep them physically away from each other.

Around the time of Bennett's birth and CF diagnosis two years ago, we learned that my grandmother, who had been most recently fighting lingering lung issues, had gained a diagnosis of her own. She had cultured pseudomonas aeruginosa.

I knew as soon as I heard my mom share with me her diagnosis what that meant. Since Bennett was still a newborn, I knew very little, at the time, about Cystic Fibrosis. But I certainly knew that that was a bad word in the world of CF.

"Psuedomonas," as it is nicknamed, is a bacterial lung infection that typically affects only those who are immuno-compromised (the elderly) or those with damaged lung tissue (those with CF). (It rarely affects healthy people.) Psuedomonas is often highly resistant to antibiotics and can be fatal.

This is why Cystic Fibrosis patients are encouraged to stay 4 or more feet away from each other - to prevent transferring serious antibiotic resistant illnesses to each other.

For a long time, my grandmother's doctors tried to help her. Everyone in our family believed that this was likely acquired because she was older and could potentially be eradicated if she got well. But, unfortunately, she continued to suffer.

Personally, I was surprised to see her doctors did not give her TOBI and other medications I knew were on the market for treating psuedomonas. But, I think, the doctors kept thinking this was all fairly normal stuff.

Eventually, my grandmother's doctor suggested that she visit the CF Pulmonologist near her home in Mississippi. This was the very best thing she could have done.

After examining my Grandmother and ordering multiple tests, he became suspicious that she, too, could have Cystic Fibrosis. At first, it was laughable. How could Bennett's 85 year old great grandmother have a disease that so many learn they have in infancy - a disease that kills fifty percent of those who have it by half of her age??

But as time went on, and as the doctor kept looking closer, we all began believing that this might not be completely off base. The truth is, more and more people are being diagnosed with Cystic Fibrosis later in life. They are calling it "delayed CF". (see: http://www.msnbc.msn.com/id/37834646/ns/health-health_care/t/aging-cystic-fibrosis-more-adults-diagnosed/).

My grandmother's genetic testing shows she and Bennett share his 621+1G>T mutation. She does not, however, have the other mutation Bennett has, which is DF508. In fact, preliminary testing does not show what other mutation she may have.

The CF Pulmonologist has said that either my grandmother has a missing mutation that has not been identified. Or, she has an unknown gene mutation that is causing the symptoms of Cystic Fibrosis to be expressed.

My grandmother could either have more extensive genetic testing done or none at all. (Sweat tests are inconclusive due to the inability to get enough sweat.) But the doctor has decided not to delay getting her care.

Since her symptoms are so classic of those with Cystic Fibrosis, the doctor put her in the hospital for a week to be given IV antibiotics (she will finish the rest of them at home). The doctor has ordered her a vest and a nebulizer, which she will use multiple times daily. And, the doctor, has placed her in the CF registry (something that happens with all CF patients) so that her case can be used for further research among doctors throughout the country.

Since we live two states away from each other and I am unable to visit her right now, I don't have pictures of my grandmother in the hospital (although I did hear over the phone the sound of her getting her "pat-pats," her hand percussion therapy given by a hospital respiratory therapist in order to break up the mucus in her lungs).

In fact, I haven't seen my grandmother in almost a year. This is because we cannot bring Bennett to my grandmother's home (too much risk of infection). And she can't come to our home (again, the risk is too high). We have been able to see her briefly a few times since Bennett has been born. But it's been in a public place and we've had to keep them a part.

I won't lie that my heart is broken over the fact that keeping my son well prevents his Great Grandmother from being more physically involved in his life. And my heart aches to know my grandmother is fighting for her ability to breathe while I am unable to travel to see her because I have my own little guy's breathing issues to care for.

But, all is not lost. As a family, we have decided to make way for Bennett and Grandmom to see each other, if only for a short time and if only from several feet away (we've once met at restaurant and once at a mall). Our once often family gatherings have significantly lessened. But we will continue to find safe ways to make it happen. (Maybe as Bennett gets older and can be willing to wear a face mask, Grandmom and Bennett can be in each other's presence more safely.)

Nonetheless, I'm so proud of my grandmother for being the fighter that she is. She now has a connection to Bennett that none of us have: she actually knows what Bennett is going through! (Can't wait to see Grandmom wearing her new Vest!)

And by golly, if my grandmother is going to have to endure life like a CF patient, I'd love for her to be officially diagnosed one...likely the oldest person with CF diagnosed ever, I'm sure! But, we'll see.

Nonetheless, my sister made the joke that this year at our annual Cystic Fibrosis 5K Walk fundraiser, we might not just be walking for Bennett. This year, we might just be walking for Great Grandma too! :)

Bennett's Great Strides Video 2012

2012-02-08T10:28:00.000-08:00

Here it is...

Bennett's Great Strides Video for our Great Strides for Cystic Fibrosis Walk 2012

It's something I both look forward to and dread at the same time each year: my effort to tell Bennett's story through pictures.

Help us find a cure for Bennett: http://www.cff.org/Great_Strides/bennettsbrigade

To share this video with others, send them this link: http://youtu.be/KS2NdJZyXZs

(You can see the videos we did for 2011 and 2010 here.)

CF Research in Dallas

2012-02-06T19:14:00.000-08:00

Last week, I had a wonderful opportunity to attend an event put on by our local Cystic Fibrosis Foundation chapter. I was most interested in attending the event because it was going to give me an opportunity to see the CF research in real life!

At the beginning of the meeting, Bennett's CF doctor, Dr. Cannon, spoke about her current research at University of Texas' Southwestern Medical Center. I *love* listening to Dr. Cannon speak as she is incredibly knowledgeable of the most current research. This is one of the reasons we changed Bennett's care to Children's Medical Center in Dallas. When Brian and I heard Dr. Cannon speak about a year ago, we were hooked and wanted her to care for our child too!

While at the event, it was fun to meet a CF mom I keep in touch with via Facebook. Susan has a 16 month old daughter who has CF.

After a short presentation, we were off for a tour of the lab to find out what research is being done to help find a cure for Bennett.

We got to see frozen human cells that the researchers use to do experiments on. These petri dishes are kept at a chilly -80 degrees!

Zemfira Karamysheva, a researcher in the lab, spent about 30 minutes explaining to us about her research, which she really enjoys working on. She works with amino acids and the CFTR gene. Unfortunately, I have no idea anything else about what she does. Between my limited understanding of microbiology and her thick Russian accent, this was as far as I got. :) Even still, the message I understood most clearly: she is working to better understand what isn't working in my son's body.

One of my most favorite opportunities was getting to watch a really cool 3-D moving image of the CFTR gene, which is where the Cystic Fibrosis mutation has gone wrong. It is hard to see but the tiny red dot next to the yellow spiral is the DF508 CF mutated gene. The scientist we worked with tried to use it to explain why the DF508 gene is to difficult to get to - because it's buried in the CFTR gene (we joked about how the white part of the gene is like the brain and the colored spirals are like the spine - both are difficult to access but it's certainly worse for a gene's malfunction to be located within it, rather than in the spiral things where it can be more accessible to fixing). I also learned more about the letters at the top of the screen. the DF508 is located within the NBD1 area (the white part). Bennett's other mutated gene (Cystic Fibrosis patients have CF because they have two mutated genes) is 621+1G>T. This is gene is located within the "R" (the purple part). While this information isn't necessarily important to me, it is important to the scientists as they are trying to locate and understand each of the 1800 genes in order to fix them.

I found Dr. Andrey Karamyshev's work to be very interesting. He is an assistant professor at the University of Texas Southwestern Medical Center in Dallas whose research interests are the CFTR gene and Cystic Fibrosis. He explained there are about 20 labs in the US doing research on CF at any given time. Dr. Karamyshev explained that scientists working on cells typically use cancer cells because they quickly regenerate, unlike healthy human cells. I guess there's is one reason I can be thankful for cancer.

Dr. Karamyshev recently released a study on the Proteins That Interact With CFTR During Translation, which he presented at the North American Cystic Fibrosis National Conference two years ago. I didn't try to have him explained what he learned.

I had hoped my reading his conclusions would help explain it in layman's terms later. It didn't. :)

The reality was I walked away with very little information I understood. But that doesn't mean I walked away with little information. Instead, I left the CF event so excited to see real life research to find a cure for Cystic Fibrosis going on in our backyard. I am so encouraged that people go to work every day working with ridiculously complicated subjects, all in hopes of figuring out how to solve why the CF genes aren't working properly. Next year, though, I'm bringing Brian (who has a bachelor's in microbiology). Not only do I think he would have *loved* to have discussed this stuff with the researchers, I know next year I might have a chance of his translating for me what the heck they are talking about. :)

Oliver's Love for Oklahoma

2012-02-05T19:19:00.000-08:00

Oliver has one state that he LOVES...

It's not the state he was born in...

It's not the state he lives in...

It's not the state that his parents' went to college (although, we've been working to raise him as a University of Missouri fan for years).

No, Oliver *loves* Oklahoma.

Why, you might ask? Because he believes Oklahoma the "promise land" for tornadoes. Seriously.

Oliver loves the TV show Stormchasers where his favorite stormchaser Reed Timmer is from. For whatever reason, Oliver seems to believe that tornadoes are happening all day, every day in Oklahoma. He dreams of going there. He can't understand why we can't drive there. This is why we get questions like, "Mom, why didn't you put our house in Oklahoma?" and "Why is it taking so long for me to get big enough to go to Oklahoma?" (I promised him that when he turns 18, he can go chase tornadoes, if he wants. :))

Unfortunately, his four-year-old mind doesn't understand that tornadoes do, in fact, come to Texas too (although, he rightfully complains, never to his part of Texas). Nonetheless, I'm afraid that we may have a Oklahoma Sooners fan on our hands if we're not careful.

Oliver's love for tornadoes has translated to an interest in the United States. He can recognize about four states right now.

But there is only one state that he regularly shapes with bites out of food. Yep, you got it: Oklahoma.

For Gavin. For Brady. For Bryce.

2012-02-02T12:29:00.000-08:00

Despite that I have felt disappointed that Bennett won't directly benefit from the new Cystic Fibrosis drug Kalydeco, the reality is I am actually super super excited for the friends of ours who will benefit.

Since those with Cystic Fibrosis are highly discouraged from being within 4 feet from each other and because Cystic Fibrosis is fairly rare, I rely on the internet to make far away friends feel like very close friends.

So, I was thrilled when I learned that three of the many families I stay in touch with through Facebook, blogs and CysticLife are going to benefit from Kalydeco. In fact, these three families each have little boys about Bennett's age who are going to get to take a pill that will significantly impact the way CF affects their life.

I wanted to highlight these little boys and put a face/name to the 4% who are going to benefit.

I am esctatic that Kalydeco has the potential to change the life of our friend. Gavin...

http://groettumfamily.blogspot.com

of our friend, Brady...

and of our friend, Bryce...

http://www.thejoneschronicles.com

...and their families.

These three little boys are three of only 1200 people in the nation who are going to see significant improvements to their health and future with Kayldeco.

I consider myself incredibly lucky to get a chance to watch this happening in their lives! I regularly chat with the brave mothers of these little boys and I am thrilled that these three mothers are getting to experience hope first hand!

No longer is this drug an amount of money given to the CF Foundation or simply text in a pharmaceutical press release. Now this drug is an real live opportunity to change the lives of living and breathing people whom I know and whom I will continue to enjoy getting to watch grow up (even if we have to always be 4 feet or a computer screen away).

So, today I put aside any wishes for my own child (for I know that time will come). Today, I recognize Gavin, Brady and Bryce - for the new hope they have - and for the lives they are going to get to live.

Cheers to Gavin, Brady and Bryce! If anybody gets to ride in the helicopter, I am so glad it's you guys!! :)

Will the helicopters return in time for us too?

2012-01-31T11:15:00.000-08:00

The cheers are reverberating throughout the internet. My Facebook page is filled with chatter among my friends who have children with Cystic Fibrosis. Everyone is going nuts:

The FDA approved Kalydeco, a drug previously known at VX-770. So many in our CF community are ecstatic! The day felt like it would never come but it is here. For many, this is the hope they have been waiting for for their children.

As of today, those with Cystic Fibrosis ages 6 and up who have one copy of the G551D mutation gene now have access to a pill that will *dramatically* decrease their Cystic Fibrosis symptoms and has the opportunity to significantly extend their life. It is not a cure. But it's as close to a cure for Cystic Fibrosis at we have ever seen.

But there's a catch. And it's a big one, especially for me. This miracle drug will help only 4% of those with Cystic Fibrosis. And Bennett is not in that 4%.

Today, I felt the reactions of the CF mothers whose children will be helped with this drug. So many of them lit up their Facebook pages with comments like, "What do you do when the FDA approves a drug designed to treat the underlying cause of your child's rare genetic illness? You scream and cry and laugh!" and "I'm shaking, crying and jumping for joy. Glasses raised for my child getting the chance to live a NORMAL life!"

Oh, their joy! I can't even imagine what I would feel like to be in their situation - if I found out Bennett had the opportunity to slow down his disease and extend his life. What an amazing feeling it must be!!

But, as I read these comments and felt the excitement filling up the hearts of our little CF community, I found myself sort of sullen and withdrawn.

Why, I wondered, would I feel withdrawn and sullen on such a wonderful day as this - the day when so many of my friend's children are getting a chance at living their lives without this devastating disease? Wouldn't I be dancing in the street and overjoyed for them as well?? Don't I, being a mother with a child with CF, most understand the desperation and immense joy they feel to have something like this for their child?

And then an image came to me.

I can imagine this must be what it feels like to be with a group of people stranded on top of one's house while the flood waters rise around us. Everyone is in it together. Everyone is wet, cold and frightened. There is no guarantee we will be found. But we try to hope.

In an effort to be found, we call out together and chant, "Help us! We need help!" We cry with each other knowing that we may not be saved in time.

And then, in the distance, we see a helicopter! Someone see us! They are coming! We all cheer with anticipation. Hooray! We will be saved! We watch the helicopter approach us, each of us begins to dream what it will be like once we are saved.

But as the helicopter nears, we realize, there isn't room for all of us. Not yet. Not now. And so, only a few of us get to aboard the helicopter. We pat the backs of those who get to get on - and we tell them how excited we are for them.

But there is an emptiness that begins to fill in our hearts: We wish we could go too.

The good news is that we have been found and may soon be rescued. But the bad news is some of us must wait much longer to be saved. Those of us who are left behind much watch the helicopter take off again, without us.

We each silently wonder, will the helicopter return in enough time to save us too?

I am so very happy about this drug. The work of the Cystic Fibrosis Foundation is amazing and this drug is just proof that we are on the right path to finding a cure. I know that there are other drugs in the pipeline that may hold the key to helping Bennett one day in the future.

But I must be honest that in the midst of the excitement, I can feel sort of disappointed that I'm not one of those mothers clicking the keys on my computer and placing on my Facebook status that my baby has a chance at a normal life, too.

For now, my son's disease will continue to wreak havoc on his body while we wait. And he is certainly not alone. This is the case for the 96% of those with Cystic Fibrosis who must wait a bit longer for help to come.

But I also realize that I can't focus today on how the helicopter just came and left - on the fact that this drug (as wonderful as it is) won't help Bennett. First, because I don't want to take away from other's joy. But secondly, and most importantly, because...

I must remember that I'm not necessarily waiting on a helicopter (or a pill) at all. My trust and hope is in God.

I must remember that God is a good God. He is a God who will leave 99 sheep to go find that 1 lost sheep. God will not forget Bennett or my cries to him on behalf of Bennett.

I must remember, even in my disappointment, that whether a pill comes in enough time for him or not, God has Bennett in his hands. God will one day heal him too. Until then, I choose to patiently wait.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

Bennett's Brigade 2012

2012-01-30T17:11:00.000-08:00

It's almost the end of January...which means our Great Strides for Cystic Fibrosis Walk is only 4 months away! I am volunteering to help lead our Great Strides Walk in Waco again this year. We have a wonderful team this year, which gives me confidence it will be even better than last year.

Here's this year's stats:

Waco Great Strides for Cystic Fibrosis Walk

Indian Springs in Cameron Park

May 19, 2012

9:30AM

This is the time of year when we begin calling out the troops for Bennett's Brigade! Those near and far who would like to walk with us in May or give to find a cure for Bennett, you can do so through the Great Strides website: http://www.cff.org/Great_Strides/bennettsbrigade

(Bennett was missing from this last year's CF Walk because he was in the hospital at the Feeding Clinic.)

We are doing t-shirts this year, which I am super excited about. So, I'll post that design up soon. And Bennett's video for this year is almost done. What exciting things to come!!

Finding Sunshine In My Mailbox

2012-01-28T22:31:00.000-08:00

{EDIT: Hanne, thanks for your comment! Good point! We used to be able to Bennett's g-tube in at home without any need for the hospital. However, he has gotten to the point where he tenses his muscles and will not relax enough where we can put the tube in. In addition, when Bennett's tube fell out last time (last week), it had been several hours and already started to close before we found it. I believe the pain from replacing the g-tube comes from dilation of the area, not necessarily putting the tube back in. But it's hard to know with Bennett because he's so frightened of the process it's probably just as fear-inducing as it is painful. Bridget and Becca, Thanks for both of your comments, as well! :)}

I. Love. Mail. Brian thinks I'm a nut, as excited as I get about mail. And, ok, so the reality is that our mailbox is most often filled with junk mail and bills. But there are those rare few days here and there where I get a real letter or a card!! This is what happened just the other day and I thought I'd share about it...

About a year ago, I was able to reconnect with a friend I hadn't seen in more than 10 years. We found each other through Facebook, which was a delight to both of us. Heather is one of the first people I met when I moved all alone several states away to attend my freshman year of college at the University of Missouri. She is just a little bit older than me so I saw her as a bit of a mentor. She helped reassure me I would be ok, even as I had just left home to be one my own for the first time.

Little did I know that Heather would offer me support and encouragement again years later. Heather contacted me shortly after our reconnection asking for my address. She stated that she "loves to randomly drop cards in the mail" and wanted to add me to her list. I cannot even express how much her cards mean to me.

One of the things that is most difficult about taking care of a child with a chronic illness is that it's chronic. Sometimes, what feels most daunting is merely the day in and day out, over and over, again and again care that must be put into trying to keep Bennett from getting sick. So, finding an handwritten card and encouraging word in the midst of one of those days can be such a sweet surprise to receive.

It was Heather's most recent card that gave me a "pay it forward" moment. Even though I am often focused on what I have going on in my day-to-day life, I believe that I have failed to recognize what little things I can do for others. I certainly have the ability to write a sentence, seal a card and send love to a friend who might just appreciate receiving some of her own Sunshine in Her Mailbox. What might take me 5 minutes to put in the mail has the potential to bright someone else's whole day. So, it's time I get my own list of people to send cards to!

I am thankful to Heather for teaching me this this week - and for the encouragement she sends right to my mailbox so regularly.

Tube is placed.

2012-01-24T19:00:00.000-08:00

{EDIT: Mary Mac, no the ER doesn't know us by name yet but all of our other doctors and nurses sure do. At this point, I think it's only a matter of time before the we have permanent name badges at the ER. :)}

Well, a middle of the night ER visit is no excuse for sleeping in. The kids jumped out of bed right on time and my alarm went off early so I could call our doctors. I had two goals today: take Oliver to the doctor for his residual cold and take Bennett to the doctor for his missing g-tube.

Fortunately, we were able to take care of Oliver first. We held him back from school today due to cold-like symptoms that weren't improving. It turns out he tested positive for RSV, an upper respiratory virus. So, he won't be able to return to school for another few days.

Then, on we went get Bennett taken care of. This is a picture of the foley that the ER doctor placed in him last night. The foley is a long soft thin plastic tube that was placed in the spot where the g-tube fell out. Because the feeding tube stoma spot so quickly fuses itself together, time is of the essence. So, the ER doctor put in a foley to prevent the spot from healing up. The foley was taped to his belly to prevent it from coming out.

Previous to our ER visit, I was under the impression that the Children's Hospital ER had the ability to replace feeding tubes when they came out (this is why we traveled 30 minutes to go to that ER). However, the ER doctor at the Children's Hospital told me that they neither had the access to g-tubes nor could they put them back in at the ER. Instead, he said, they could give Bennett only a placeholder until we could see the Pediatric Surgeon during clinic hours.

Last night, the ER Doctor placed the foley catheter in the hole where Bennett's g-tube was and told us we would have to come back tomorrow to get the g-tube replaced when the Pediatric Surgeon was in the office.

I was surprised. I thought, "aren't there Pedi Surgeons on call? Isn't this a 24/7 hospital and ER?? Is there not a Pedi Surgeon Med Student on rotation who could help?" But instead of asking questions, I just assumed it was what it was. I took his response as protocol since it was in the middle of the night and I hated to have to wake someone up anyway.

But I wish I would have pushed harder.

Late this morning, we met our Pediatric Surgeon at the Pediatric Surgery clinic. It was good to see her face. I knew she was going to be able to help. She is such a very very nice woman - so competent and caring. But the first thing out of her mouth was, "I can't believe the ER doctor last night didn't call us!! I have already sent off an email instructing all ER doctors to call Pediatric Surgery when a g-tube issues arise. They had the ability to help you last night and they didn't. I am so sorry you had to drive back and forth twice for this!"

I was bummed to hear this. It would have been so nice to have not had to come back down to Temple for another appointment only hours after I was there. But I appreciated so much now knowing this information.

This is how these things work when you have a chronically ill child. As much as I feel like I know a hospital/medical process or system, I find that there is so much I don't know. When it comes to medical care for my child, it's all about learning through trial and error. It has been only through trial and error that I've learned which doctors are most helpful, which hospitals are best, ways to save on medical bills, which medical products work and how to get the help I need most efficiently.

It's a bummer that someone didn't do their job last night by not calling the Pediatric Surgeon on call. Sure, the ER doctor didn't have access to the g-tubes and couldn't put a g-tube in...but he could have called to find someone who could.

Nonetheless, I have learned that, ultimately, it's my job as mom to push the doctors to get what Bennett needs. And now that I know this information, next time this happens, we will get it taken care of at the ER. I am just satisfied to know our doctor is going to make sure this kind of thing doesn't happen to other patients in the future.

The top of Bennett's g-tube.

The bottom of Bennett's g-tube, where the water is placed to make a bubble to keep it inside.

Nonetheless, putting in a g-tube in the office meant no pain medication, which was hard. If we had been in the ER, they could have given him something to make him loopy and relaxed (one more reason I was hopeful the ER could help us). However, they don't have the ability to monitor his heart rate in the clinic so we had to go without pain medication. I gave him Tylenol beforehand, which worked well (something I learned through trial and error during our last experience with the g-tube falling out).

This shows the g-tube size: 14 French (the size of the top of the tube) and 1.5cm long (the length of the bottom part of the tube). Our last one was 14 French, 1.0cm long. Bennett kept that same size since he was an infant, so it doesn't surprise me that it was time to go up in sizes.

Before the g-tube was placed back in, the doctor and I talked about why it may have fallen out to begin with, especially after we just placed it in a few months ago. She and I discussed changing the type of g-tube completely but the decision was eventually made to simply put in a longer g-tube.

The doctor theorized that the reason the g-tube fell out in the first place is because he out grew it. The doctor believes that the current g-tube had not been sitting as far down in his stomach cavity as it should have been. Instead, it was likely just resting in an insecure place where it was only a matter of time before it came out.

So, she very quickly put in a new longer g-tube, which she believes is going to be much better for him. It looks the same but sits up only slightly higher than his last one did. The hope is it is much more secure in the stoma and will not be able to be pulled out again anytime soon.

So, I am hopeful this issue is now resolved. Between ER visits due to g-tubes and rectal prolapse, I'm about done. My confidence is we have now resolved both issues, which is good because I'm tired of going to the ER (the novelty wore off really quick).

The reality is, though, ER visits for rectal prolapse and g-tubes are stressful and inconvenient. But it's not the ER visit we really fear. I am more and more aware of what we face in the future with Bennett: ER visits due to lung issues. This can be more life threatening and, ultimately, that's what I dread most.

We are monitoring Bennett for RSV. I didn't even think about having him tested this morning but we think he likely has it too. RSV is very contagious and there isn't much you can do for it. Breathing treatments tend to help so we can increase our treatments from twice daily to 3 or 4 per day. But the reality is, viruses just have to take their course and work themselves out. I am praying that there are no complications with this for Bennett and for there to be no lung damage because of it.

In the meantime, I'm so proud of my other little guy, Oliver, for getting some medical attention today. It's about time he gets to be the center of attention at the doctor. He was so brave today getting his weight, temperature and blood pressure checked. I joked with the Pediatrician that I'm so focused on Bennett's health, I'm afraid I'm going to completely miss something significant with Oliver's health. But she reassured me I would not. :)

I think both boys will be fine. G-tube is in. RSV will be watched. Oliver should return to school soon. Bennett is back to normal.

The highlight of my day today was having our beloved babysitter Margaret take the kids for a few hours later this afternoon so I could take a nap (three hours of sleep last night didn't cut it). It was really wonderful.

And to cap it off, Oliver (with a little help from Margaret) brought home some flowers from the grocery story for me. It was very sweet and a great cap to a day that that didn't start out quite so rosy but ended well.

Another ER Visit. But, hey, what's new?

2012-01-24T01:53:00.000-08:00

I was just falling asleep a few hours ago reflecting Bennett's Cystic Fibrosis. Little did I know that I would get only about an hour of sleep before Cystic Fibrosis would force me out of bed, in the car and back to the ER to care for Bennett.

Apparently Bennett's G-tube fell out again during the night.

If it feels like we were *just* dealing with g-tube issues, it's because we were. Just last October we had the same thing happen.

So, needless to say, at this point, we may have to simply change the type of gastric tube that we're using, which will be not only inconvenient but will bring on new problems. But that's to figure out with the doctor tomorrow.

I didn't realize but the Children's Hospital ER do not have G-tubes on hand and do not necessarily place them back in. Instead, they put in a folly (a very soft tube) in the space where the G-tube came out and instructed us to return tomorrow during Pediatric Surgeon Clinic hours to have it put back in.

At the clinic, the doctor will have to dilate the hole and replace the tube. It was horrible last time and I dread doing it again. They don't give him pain medicine so it's not fun for anybody.

Nonetheless, I am going to try to drift off to sleep for a few hours before getting up and returning to the doctor. At least this ER visit wasn't a hospital admission. I can be thankful for that!

What We've Learned So Far - Tip #6: Surviving the Hospital

2012-01-22T09:32:00.000-08:00

A friend of mine's son is being admitted to the hospital this week. She asked if I had any tips of things to bring to the hospital. While I was looking for my list, I found this list I wrote last summer: Tips for Surviving Life In the Hospital. I thought I would post in case others could use it:

Tips for Surviving Life In The Hospital

* Use a notebook.You may meet nurses, doctors or therapists in the hallway, or have them come to your room at random times of the day. Carry around a small notebook so when you speak with one of your hospital specialists about important information, you will not forget what you spoke to them about. This will also allow you to keep track of questions you may have or important information you will want to remember.

* Decorate your door. Children love bright colors and seeing their name printed. As an activity for your child, decorate a poster with your child’s name on it and place it on the door. It will help the child recognize his/her door and make the doorway a special one to return to.

* Decorate your room. Your child’s room at the hospital is their home away from home. Consider purchasing children’s removable wall decals, flameless candles, an inexpensive lamp and/or a small vase of flowers to make your room feel less “hospital” and more “home.”

* Consider pleasing all of your senses. Other ways to make your hospital room more “homey” include playing classical music on CD, computer or MP3 player or putting out potporri.

* Communicate your needs through a sign. Your nurse is there to help you and your child. However, nurses typically take care of more than one patient. And, nurses change every shift. So, if there is something very important you want to communicate to all the medical staff, place a note on your child’s door for the staff to read such as, “Sleeping. Be quiet” or “Patient Napping.” This will help all visitors be considerate of use your child’s space and schedule.

* Use a sound machine in your child’s room to drown out typical hospital noises or other voices.

* Keep time. Hospitals, unlike hotels, do not provide alarm clocks. While you can request your nurse wake you up at a specific time, it’s nice to have an alarm clock for you to set as you please.

* Keep family in touch. A great way to share your hospital experience with family is through a blog. Some patients also use CaringBridge (caringbridge.org). The benefit of communicating through a website or blog is that you can update the blog/website at times which are convenient for you and friends and family can stop constantly asking “how is he/she doing?” as they have access to your information at their convenience.

* Don’t forget meal times. Purchasing inexpensive microwavable plates, silverware and cups can help when friends or family join you for a meal. Even if a meal has been provided by a fast food restaurant, it always feels nice to eat on a real plate. Consider bringing plastic tupperware containers to keep leftover food. Some families find purchasing salt, pepper, ketchup and other condiments make meal times easier. You may also appreciate having dish soap on hand to clean any kitchen utensils you keep in the hospital.

* Make bath time more enjoyable. Hospitals do a great job of providing towels and sheets. But there is nothing like having a nice fluffy towel when getting out of the hospital shower. Consider bringing your own towels and bathmat from home. You will also want to bring your own soap and shampoo. Children often appreciate having their own toiletries during bath time as well.

* Toddler playtime is more fun with scooters. Kids love to run up and down the hospital hallways. If your child feels well enough, bring a toddler scooter to keep your active toddler happy when they are not in therapy.

* Create a play area for your child. Children who are stuck in a small hospital room a lot of the day will appreciate having a carpet in the room to sit on or a small table and chairs to play at. This is even more important for those children in isolation who cannot join the other children in the hospital play room.

* Sleep tight with your own blanket. The best way to make the hospital feel like home is at night. You might want to bring your child’s own pillow and blanket. The more consistent the hospital room is to home, the more at peace your child will be. For your own hospital bed, you may want to bring your own soft sheets. Hospital beds are longer than normal so when shopping, grab “extra long” twin sheets. These can usually be found during “back to school” season at Wal-mart or Target. Or, they can be ordered online.

Proof

2012-01-18T18:50:00.000-08:00

{EDIT: Heather, here is the theme song. I guarantee you've heard it before: http://www.youtube.com/watch?v=e9vrfEoc8_g :)}

I thought I'd show proof how much Brian loves Superman...and why our children are destined to love it too:

This is Brian, in 1983, at age 6 dressed in his homemade Superman outfit, which included his "Clark Kent" shirt and belt. (When we were first dating, I cut this picture out to make Brian a scrapbook to tell him I loved him as much as he loves Superman, hence the weird photograph size.)

Thanks to my dear friend and bridesmaid Laura who reminded me of the picture Brian made on our wedding day shortly after we finished our vows: Brian with his Superman shield on his chest underneath his tux.

Our little Superman fan in the making.

It's a bird! It's a plane! No it's...

2012-01-15T22:47:00.000-08:00

Since Brian was very small, his favorite childhood hero has always been Superman. I knew this pretty early on in our relationship. And I knew what that was going to mean for our boys: they would also likely have a mutual love for this superhero:

Both of the boys *LOVE* Superman.

They run, jump, save people in distress...and sing the theme song by heart.

Oh, and Daddy often helps them fly.

They watch Superman twice a day, every day during Bennett's treatments. (Too young for the 1970's movie version, both boys are thrilled to watch 1940's black and white version.)

Oliver received a handmade cape from our friend Bethany for his birthday. But poor little Bennett was so sad he didn't have one too. So, in my own homemade fashion, I found one of Brian's undershirts shirts, pinned it and voila!

I know that one day I will have to explain that, in addition to Santa and the Tooth Fairy, Superman is not real. But, thankfully, I won't have to do that any time soon. It is obvious that he is very real to their little Superman-loving hearts.

What a Difference a Doctor Makes

2012-01-12T21:59:00.001-08:00

Today, Bennett and I attended his Gastroenterology checkup with his GI doctor. I can't say enough good things about this doctor. I went to Bennett's appointment today very fearful that Bennett's weight was not where it needed to be and that we were losing control of being on top of it. But the GI doctor, in his very usual manner, reassured me Bennett was doing just fine.

It felt good to have this doctor reassure me, because every time he has done so, I have found he was right.

I feel so lucky to have found a doctor that we can not only be confident in but who communicates regularly that should something go awry with regards to Bennett's care, he will be there to help us figure it out. I appreciate this aspect of Bennett's doctor tremendously because...

It hasn't always been this way.

We've been navigating caring for a child with special needs for over two years now (which, let's be honest, feels a bit like 10 years but that's for another blog post...). The team of doctors we have now are completely different from the ones we started out with originally. This is because over time and along the way, it has become clear which doctors were not a good fit for the way we ultimately desired to facilitate Bennett's care.

At one point, alot of my time was just spent fighting our doctors to hear our concerns, to call us back, to come up with effective ways to help Bennett.

Now, we no longer have to do that. The doctors we have are advocates of us, as parents, and view us as important to the process as they are. The doctors we have now are open to our suggestions and offer us an array of new and thoughtful ideas to address Bennett's issues.

I am so very very thankful for the difference a doctor makes.

In as much trouble as Bennett has had over the last two years, it looks like we are starting to emerge from these years with fewer complications than before. I lay responsibility with our new doctors who have not only helped us put out fires but keep them out.

It occurred to me today how thankful I am, not only for the doctors we have on our team but for the ability to choose doctors. Being in Central Texas, we live within a two hour driving radius of four excellent children's hospitals! How amazing is that?! So, should we come to the conclusion we need to add (or refuse) a member of Bennett's Cystic Fibrosis medical team at any time, its fairly easy to do so because we have access to so many health systems within the area.

Today, as Bennett and I stood under the florescent lights, enclosed by the baby blue walls and sterile medical equipment in the Pediatric doctors office, my heart beamed with thankfulness. Yes, Bennett received a clean bill of health today. And yes, his weight ended up being alright. But my joy came from the fact that, overall, we are just incredibly blessed.

Missing Rectum?

2012-01-09T14:26:00.000-08:00

It's not every day that a mom has a conversation in which she learns her child no longer has a rectum.

I kept wondering what the heck the Pediatric Surgeon was talking about during our Post-Op follow up appointment today. She kept saying things like, "he doesn't have a rectum now" and "a missing rectum." I mean, he has all the correct plumbing down there, hole and all. How could he be missing his rectum?

So, obviously, I turned to the most reliable source at my fingertips: http://en.wikipedia.org/wiki/Rectum

How in the world did I get through life without realizing the rectum is actually the name of the lowest part of one's intestines??

If Cystic Fibrosis does nothing else, it is giving me a crash course on the human bowel system.

Apparently, Bennett's pre-Christmas surgery took out his rectum, the bottom end of his intestines. Thankfully, however, his sphincter muscle and continence are in tact...meaning he can and will always be able to go to the bathroom normally.

The only disadvantage of his missing his rectum (the lower part of his bowel) is that it may make his stools more loose and more frequent for the rest of his life. The rectum is a sort of reservoir for our poop which usually absorbs water from our stools. Without that, stools tend to be more loose.

This is most important to me right now because potty training is on the horizon. Potty training is already hard, how much harder will it be with a child who has loose frequent stools?

The Pediatric Surgeon explained that Bennett will have to learn that when his body tells him he needs to "go", he will probably need to go sooner than most of us. And, she said, we will probably have to be more patient for the potty training process with him.

I asked her if I need to delay potty training with him but she said no. She seemed to feel very good about my personal philosophy regarding potty training: let the child do it on their own over time.

I am so glad we have just finished potty training with Oliver. It was a fairly easy (although lengthy) process that gives me the confidence that it does happen, even with boys, if we're patient enough. So, we will work towards that with Bennett as well. He may be the last out of diapers but he will get out of them at some point.

Our Holidays In Pictures

2012-01-06T22:25:00.000-08:00

It's hard to believe the holidays are over. They came and went so quickly! Here's what we did...

...enjoyed a Christmas party at Oliver's school.

...recovered from surgery.

...spent time with family.

...watched Tornadoes on IMAX!

...discovered what Santa brought!

...ate everything with ketchup ("cuh-cuh") including, but not limited to, Lomein noodles!

...fell in love with jet turbines on the airplane ride home (sweet Oliver is now obsessed!).

It's really nice to be home again, snug in our own beds. But we really enjoyed our Christmas holidays, with family, all together.

Comforting Words to Share

2012-01-04T20:48:00.000-08:00

Several friends recently shared words of comfort and peace with me. These words came shortly after Bennett's pre-Christmas emergency surgery, to which I found them to be very relevant to the rhythm of my own heart. I thought I would share them here. Sometimes, sharing words with others is really just sharing it again with myself (which is why I bolded the parts that most stuck out to me):

From Matt, our friend who is also a hospital chaplain:
"As best as you can, be fully present in each moment and task before moving on to the next or most pressing one. Keep taking everything one piece at a time. I hope strongly alongside of you that God will be revealing a broader understanding of Christmas for you and your families. From the midst of struggles with pain, or the consistency of frustration, we can easily and understandably lose our perspective Breck. I pray that you continue to fight to see the greater reality of a God who has not abandoned us in the midst of our broken world's realities, but rather a God who actually hurts with us in the midst of their occurring. I'm well aware that words can feel like weak symbols of how you truly feel or of what we want to express to you at times like these. With that said, I want you all to know that you are loved, and that you are not alone in your grief spiritually or communally, even though it can be isolating. I want to prayerfully leave you with one of my favorite blessings, and words that seem especially fitting for where you find yourselves right now:

"I pray that out of his glorious riches He may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge — that you may be filled to the measure of all the fullness of God." Ephesians 3:16-19

Amen (which I need to be reminded sometimes means 'may it be so' or 'so be it'). So, remembering that at this moment and in this season: Amen to all of you Breck. Amen.

From Julie, a long time mentor and sweet friend:
A link to the post http://www.itakejoy.com/de-clutteringth/ which offers these words,
"So, as I begin a new year...a very busy time for our family, I resolve to deal with my soul-clutter, so that I may have strength to face each day in peace. I come to the place where I know I will find the help that I need. I come to my Father and ask Him to help me, His child, to show me how to make get rid of the junk that is unnecessary, and to help me clean out and organize my soul. He speaks to me gently:"

“In quietness and rest shall be your strength.” Isaiah 30:15

From Lydia, another CF mom:
My heart aches that you all had to go through this during the holidays, but I know Jesus has been with you every step of the way. I know it goes, how if feels like CF isn't really at your front door, and you get adjusted to it all, and then something 'traumatic" happens at the unexpected times.

For this reason, since the day we heard about you, we have not stopped praying for you. We continually ask God to fill you with the knowledge of his will through all the wisdom and understanding that the Spirit gives, so that you may live a life worthy of the Lord and please him in every way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and giving joyful thanks to the Father, who has qualified you to share in the inheritance of his holy people in the kingdom of light. For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves. Colossians 1:9-13

Christmas Rain

2012-01-03T21:14:00.000-08:00

The boys received alot of nice toys for Christmas. Santa brought Oliver a Duke jersey, a large United States map puzzle and Police Uniform. Bennett enjoyed a pretend vacuum and a pretend fireman water hose backpack.

But one of their favorites were the frog raincoats and umbrellas they received from their great grandmother. I knew the kids would *love* playing out in the rain. However, we literally went almost all without rain this summer in Texas. So, I was more than happy to let them play outside when it rained Christmas Eve.

Here's our little guy just days after having surgery. It's amazing how wonderful modern medicine is that he would be up and playing like normal just a few days after losing parts of his colon.

Sweet Oliver enjoyed his umbrella most. He was playing like it was a tornado and having a very good time in the rain.

What We've Learned So Far - Tip #5: Packing for the Hospital

2012-01-02T18:41:00.000-08:00

Consider this as part of my new year's resolution: organizing my life. :)

I have dreaded doing this. Each time we have been hospitalized, I have thought I should write down a list of things I want to remember next time to bring to the hospital with me. And each time, I have dismissed my need to do so because I keep thinking our last hospitalization is our last.

However, it looks like, based on our last hospitalization just before Christmas, I should probably sit down and write this list, if nothing else, maybe I can jinx myself in not having another hospitalization for a while!

So, here is our family's personal list of...

Things To Remember To Bring To the Hospital When A Child Is Sick:

* Towels (hospital towels are small and rough)
* Bath mats or other mats for the room (the floor is very hard and very cold)
* Blankets and Pillows (be prepared to sleep on a side couch; bring your own comfortable bedding)
* Sound machine (hospital sounds can be loud making one's ability to rest difficult; a sound machine is very helpful!)
* Snacks (there is no guarantee the cafeteria is open all day/night; sometimes meal time comes and goes and it's difficult to get away)
* Medications (sometimes, believe it or not, hospitals don't actually have readily available some of the medications you may need; bring nebulizer/breathing treatment supplies, as well)
* Warm Clothes, especially socks and bedroom shoes (for parent and for child; hospitals are usually cold)
* Toiletries (this ain't a hotel; don't expect them to have much if you forget something)
* G-tube supplies (I have learned this the hard way. If the child has a g-tube, bring all supplies. Again, you'd be surprised by what they don't have.)
* Computer, an ethernet cord and, if possible, your own access to the internet (many hospitals do not have a very good wireless internet system; be prepared to have to link with an ethernet cord or, better yet, tether your internet to your phone or ipad; my ability to get on the internet is what keeps me sane at the hospital)
* Phone charger
* Toys (waiting for doctors can take a while, bring something to entertain the child)
* A portable DVD player and/or handheld game system (most hospitals don't have a DVD player in the room)
* A list of medications (it's amazing how many times I'm asked to give this information via memory; a list of medications and their dosages helps simplify this process during admission)

What to do with Christmas Cards...

2012-01-01T17:13:00.000-08:00

One of my favorites parts of getting Christmas cards each holiday season is rearranging the pictures on our refrigerator. A few years back, my mom bought me a giant magnetic collage frame to help organize the pictures on my fridge.

So, every year, I take our Christmas cards and cut down the pictures so that I can fit in the frame as many of our friends as possible. It makes me so happy taking out the old pictures and replacing them with new photos of our favorite people!

If you've sent us a Christmas card this year, there is a good chance you're sitting on our fridge. :)

Waiting for Santa

2011-12-31T21:25:00.000-08:00

When our family was in town for Christmas, they asked the boys to get up on the fireplace to take a picture in their matching Santa pajamas. The boys were so very excited for Santa to come while they were sleeping!

Running as hard as I can to stay in place.

2011-12-28T12:40:00.000-08:00

We had a wonderful Christmas with family. Hospitals, I have decided, are the.very.most loneliest places on.earth. So, I am incredibly thankful that we were discharged after one night and were able to go home to spend Christmas with family. (I will post Christmas pictures soon.)

But, you know how they say, "If you don't have anything nice to say, don't say anything at all"? Well, I've been trying to stick to that...with regard to my relationship with Cystic Fibrosis. But it's very hard to do. After numerous hospitalizations and multiple surgeries, all complications of CF, I have hardly anything nice to say about this evil disease.

I think that I am just so.tired.of.caring. There is much much to care about with Cystic Fibrosis, especially when one's CF has alot of complications like Bennett's has had. And I'm just so tired of caring about them...

I'm tired of caring about his rectal prolapse - did we fix it? will it stay fixed? how will I potty train him with this history of rectal prolapse, will it only irritate it more?
I'm tired of caring about his C.Diff - will it come back? is this what caused his rectal prolapse? is this why his diapers are so stinky?
I'm tired of caring about his lungs - is he junky? are they crackling? is he hiding pseudomonas? will that runny nose/cold/cough turn into something worse?
I'm tired of caring about his medicines - which ones did I already give? did he get them on time? did I remember to refrigerate? do I need to reorder?
I'm tired of caring about his therapies - are they working? is he with the best therapist he can be with? are they working on the right things? does he need more or less?
I'm tired of caring about his doctor appointments - when is his next appointment? will they be unhappy about his weight? will they add a new medication? will they want to admit him?
I'm tired of caring about his enzymes - did I bring them? has he had them? is it enough? are they working? what if I forget to give them to him?
I'm tired of caring about his eating - is he eating enough? is he getting the right types of foods? is he pocketing his food? is he chewing correctly? could he accidentally choke?
I'm tired of caring about his g-tube - is he getting too much food by g-tube? what if the g-tube falls out? could he strangle at night in his gastric tubing?
I'm tired of caring about his weight - is he gaining? is he too skinny? is he getting enough calories? will his lack of weight gain stunt his height?

I'm just so tired of caring.

I'm running as hard as I can to stay in place. Working hard to not move at all. And yet, the inertia is incredible. I am very aware that, without a cure, Cystic Fibrosis is going on win out in the end.

I am desperate to hold on to however much normalcy we can keep for now. But the havoc this disease is reeking on my son has not gone unnoticed. His tummy holds a g-button. His abdomen sports a huge scar. Parts of his colon and small bowel are missing. Our kitchen cabinets overflow with medications.

But how do mothers who love their children not care?
To not care seems like only giving up.

I work hard to get breaks. Breaks during the week. Breaks from the kids. Breaks with friends. Breaks with my husband. But, somehow, that doesn't really seem to relieve the inner turmoil I often feel.

Because I carry it with me.
Deep down inside.
Fears.
Disappointments.
A sense of hopelessness.

I'm weary, feeling as though I am running as hard as I can...
...just to stay in place.

We are going home!

2011-12-23T13:01:00.000-08:00

We have been discharged!

We have met with the Pulmonologist at Scott and White Children's Hospital who has given Bennett an antibiotic for the wet cough he may have received from being intubated during surgery. We have also met with the Pediatric Surgeon who has given us the green light to go home.

Bennett is feeling fabulous! He isn't too interested in sitting down (because its alittle tender). But otherwise, he's feeling great.

So, we're going home for Christmas!

Receiving a Get Well Gift

2011-12-23T11:26:00.000-08:00

Bennett was delighted to receive a very sweet and generous Get Well gift this morning from our family friend, Glynis.

Balloons! Bennett *loves* balloons! (In fact, Bennett saw someone else's balloons at the nurses station this morning and laughed and laughed at the silly smiling balloons.)

Bennett loves to kiss the things he likes. So, it's no wonder he kissed his "ball" balloon!

...and Bennett's very favorite toy: a stuffed animal!!

Bennett named his dog, "Go-Go." It may or may not have something to do with wanting to go bye-bye!

Big brother Oliver loved the balloons too.

Our IV Pole Christmas Tree

2011-12-23T06:48:00.000-08:00

I added some Christmas lights to Bennett's IV pole for ambience in our room. Everyone who comes in seems to really love it. One resident even told Bennett, "I love your IV pole Christmas Tree." I thought that was pretty clever to think of it as a Christmas Tree. So, we have enjoyed considering it our little corner of Christmas. If only I could pretend the blood pressure machine was a warm fire!

IV fluids keep Bennett hydrated.

As soon as Bennett got his pain medication this morning, he was out!

The glow of our Christmas tree.

Miniature toy cars are never far...even in the hospital.

Bennett has been fed through the G-tube some since he hasn't had much appetite.

Bennett gets his breathing treatment.

Sweet little hand all bandaged up.

Early Morning At the Hospital

2011-12-23T04:38:00.000-08:00

Of course, it's 6AM and people are already treating our room like a revolving door. Nurses, doctors and residents. Everyone wants to come by and they believe the best time is as early as possible. Fortunately, I know this now so I am up before the sun and trying to grab a shower if I can (shower has no hot water at this point...why??)

Thankfully, I feel like it's down hill from here. We're through the hardest part. Now, we're coasting through the recovery period before going home. Bennett ate alittle applesauce last evening, has handled his feeding tube through the night and is now sitting up. I think they will want to see bowel movement before we go. So, let's hope Bennett's GI track gets the memo that we're trying to get out before Christmas.

Bennett began feeling better around 10pm last night. He started talking more and seemed *much* less agitated than he was earlier in the day. In fact, he loved taking a ride around the unit on my lap while Daddy pushed us in the wheelchair. And he began playing cars again right before he fell asleep last night.

As Bennett was started feeling better, he asked for Daddy and Oliver (whom he calls, "ah-ah-ah"). They had just left to go home for the night so I let him call them on the phone.

Bennett talked to Brian and gave us some idea of what he thinks is going on. Of course, Bennett's language skills are a little late (normal for him) but here's what he said:

"Hi Da-da. Bye Bye? Boo-Boo (spoken in a pitiful voice). Bump-Bump, Bump-Bump (the sound of a heartbeat)."

which means...

"Hi Daddy. I wanna go bye-bye. I have a boo-boo and the doctor is trying to fix it."

Bennett really hates having his IV in. He also hates the blood pressure cuff on his leg and the oximeter (which measures the oxygen in his blood) on his toe. We always know we're getting ready to go home when we begin seeing them take off cords one by one. So, I look forward to them beginning to take them off in this morning.

I am very pleased with how things are progressing. I am feeling lighter and looking forward to Christmas once again!

We'll see how today progresses! (...and if I ever get hot water!)

Pictures: Scott and White Children's Hospital

2011-12-22T19:53:00.000-08:00

Our first experience with Scott and White Hospital came the moment we learned Bennett (who had just been born) was critically ill and needed to be transferred to Scott and White in Temple. That was over two years ago.

Since then, Scott and White opened their very own Children's Hospital, which opened in October of this year. We are very pleased with the new hospital. The rooms are nice. The staff is relaxed. And we have felt very cared for.

Bennett's Room (Bennett prefers to lie down right now.)

The adorable sign about Bennett's door. This is something special the Child Life staff does at Scott and
White. (I remember Bennett's first little sign when he was in the NICU).

Bennett has been chewing on a bottle all day today. It's easier than using a straw and making him sit up. He has loved chewing on it and sucking down apple juice.

One of the greatest blessing about Bennett being two years old this hospitalization is that he loves to watch movies. So, we have been watching Cars2 and Finding Nemo all day.

Recovering

2011-12-22T15:02:00.000-08:00

We are in our hospital room where Bennett is recovering well. He is on morphine but seems fairly peaceful as long as he is lying down.42286

The Surgeon explained they took out about 4-6 inches of his colon (the bowel that is connected to the anus). Taking out this "extra slack" of colon will hopefully prevent the rectal prolapse from happening again. The hope is the bowel is too short now to come out.

Unfortunately, there isn't much they can do for his loose sphincter muscle (the muscle that opens and closes when one poops). The surgeon said his sphincter muscle seems stretched because of his chronic rectal prolapse episodes. She believes, however, the muscle will eventually tighten up over time if its give time to rest (aka he stops having prolapse of the bowel).

The Surgeon surprised us today by telling us that if all goes well, we can actually leave tomorrow! I think that sounds really good so I hope we can!

Our biggest concern at this point (and the reason we are in the hospital) is the risk of infection. Resecting the bowel (cutting it, taking part of it out and putting it back together again) can risk the highly not sterile feces from entering the body. The Surgeon said she put the stitches very close together in order to prevent leakage. However, any leakage at all can cause peritonitis and risk serious illness fairly quickly.

Bennett does have a small fever now but the nurses haven't been terribly concerned. We won't likely go home if his fever doesn't go down. He was given antibiotics during surgery so hopefully that will take care of any potential infection.

For now, we are chilling at the hospital and trying to keep Bennett comfortable.

Surgery is over.

2011-12-22T10:18:00.000-08:00

Bennett's Pediatric Surgeon just came and spoke with us. Surgery went well.

He came out of surgery pretty agitated (I'm trying to keep him in my arms)...

...but has since calmed down.

Will post more soon!

Surgery has begun!

2011-12-22T07:33:00.000-08:00

Bennett just went back for surgery a few minutes ago. He road off in to the sunset on his pink plasma car provided by the hospital. The nurses had to take him to the OR to put him on the bed and give him sedation. It was sad not to be there with him during that time. It has to be terribly frightening. (I can hardly think about it because it makes me so sad for him. This kind of stuff is getting harder and harder for me as I know he is older and more and more aware of what is going on around him.)

Bennett will be sedated with a gas mask first, then an IV narcotic. We don't know if he will wake up loopy or just downright made. We will see.

The procedure being done to him during surgery is called the "altemeier procedure". Basically, the Pediatric Surgeon is going to go from his bottom and cut off the part of the bowel that is loose and keeps coming out during his rectal prolapse episodes. This procedure should leave no scars and should generally not hurt him when he wakes up.

Vitals and Paperwork Completed!

2011-12-22T06:03:00.001-08:00

We are here. Boys are wearing their matching Santa pajamas and fireman boots.

Thankfully, they have a playroom on the OR floor so both boys have briefly forgotten where they are. :)

We have signed paperwork and taken vitals. We are waiting to talk with the Anesthesiologist.

Ready to Check In At the "Hotel" In the Morning

2011-12-21T21:05:00.000-08:00

We are getting everything ready to check in to "Hotel Scott and While Children's Hospital" in Temple early early tomorrow morning! Our family has arrived so we already have extra hands on tap should we need help.

We have tried to explain to both boys what is going on but they are still too young to understand. However, they both pulled out their pretend doctor set today, for which I was glad. We will explain more to them both tomorrow when we are at the hospital.

Bennett can't eat or drink after midnight tonight. So, I am glad we have to be at the hospital so early tomorrow morning. We will wake him up in the morning and bring him to the hospital in his pajamas.

Oliver has made it very clear he wants to join us at the hospital. We'd prefer that he would stay with our family but we have learned from prior hospitalizations that it's best to keep Oliver with us, to let him see what we are doing and to help give him the confidence things will be ok.

When we were at the ER the other day, he and Daddy came into the room where Bennett was crying and there were lots of doctors and nurses around talking. Oliver leaned over to Brian and said, "Daddy, I'm scared."

Oliver is now able to articulate his feelings. This is important because he isn't just able to articulate it for himself but for Bennett too. So, we have begun the very beginning stages of explaining to both boys what is wrong with Bennett and why we have to go through what we have to go through.

I have struggled to articulate how I feel about Bennett's surgery tomorrow. Part of me is completely fine, not worried at all. The other part of me is really sad - confused, too, I think. Some moments I feel in control and confident about the world. Other times, I feel lost and at the whim of everything around me.

My prayer in this season of Christmas is for God to speak to me in a unique way as this Christmas certainly looks different than the way I am used to. I long to be in touch with joy, peace and hope during this time...even if there are very real parts of me that feel sadness, chaos and loss of hope.

Cystic Fibrosis does not know about Christmas time or holidays or family vacations. It does not know about hopes and dreams and desires. But I do. And I pray that God will reveal himself in a new way this season in the midst of this conflict.

We're packed and ready to go. We will be at the hospital by 7AM!

Oliver talks Tornadoes

2011-12-21T10:35:00.000-08:00

Oliver's favorite Storm Chaser is Reed Timmer from the show "Storm Chasers."

Oliver has most recently been talking about how he wants to riding with Reed in his red "Dominator" car ("the one with spikes") and chase tornadoes in Oklahoma - seriously.

So, last night, Oliver sat down with me to record Reed a message:

I posted the youtube video on Reed's facebook page last night and within an hour, Reed had already commented: "That is adorable! I'm going to share this!"

Within minutes, Reed had posted and tweeted Oliver's video to all of his fans:
Check out young Oliver, only 4 years old and is obsessed with tornadoes already! I think it's safe to say we'll see him out on the Plains in no time!
This morning, I explained to Oliver that Reed had seen his message and liked it. Oliver grinned really big. I explained that Reed was probably not able to come pick him up in his red car and take him to Oklahoma right now but...that Reed had shown his message to all of Reed's "friends."

Oliver really enjoyed hearing that and asked if Reed had shown his video to Reed's storm chasing buddy, Joel (to which I said, "probably").

And then, Oliver said, "well, when Reed comes and gets me, I'm going to show him tornadoes in Texas."

Buddy, I hope Reed comes by and picks you up. And I hope you eventually do get to see a tornado!

Surgery Preparation and lab results

2011-12-20T13:52:00.001-08:00

We heard from the hospital today. Surgery has been scheduled for 8:15AM on Thursday. We will report to the hospital shortly before then. The surgery is expected to take around two hours. He will then recover for the next two days.

I am hopeful that Christmas will be an incentive for everyone to help Bennett heal as quickly as possible. I also expect that moving his surgery up from noon to 8AM will facilitate in a quicker discharge. But, there is a very good chance we could be in the hospital on Christmas if anything goes wrong.

The Pediatric Surgeon called me today to let me know she did finally hear back on Bennett's lab work. It turns out that he has no infection. Therefore, this most recent episode of rectal prolapse has no real origin.

This is good because we have no infection to worry about (particularly C.Diff.). But this is bad because it does make Bennett very prone to having rectal prolapse issues at any moment of the day.

This is even more reason why it is best for us to complete this surgery sooner than later. We are so happy to know that, after surgery, this issue may be resolved for some time.

The surgery is not guaranteed to last and is almost definitely not going to resolve his issues completely. But, it's our best chance for success for the time being. So, we're looking forward to solving this issue and, hopefully, preventing more ER visits due to rectal prolapse in the future!

Tomorrow is our day to prepare before surgery. I am so so very thankful for a few more days to prepare!

Santa Picture 2011

2011-12-19T14:21:00.000-08:00

One of the things I was really looking forward to about going out of town for Christmas was getting to take the boys to visit Santa at Bass Pro Shops.

We don't have one near Waco but I absolutely *love* the Santa experience at Bass Pro Shops. It's peaceful, joyful and every year so far we have received a beautiful picture (for free, mind you)!

There are alot of things that are disappointing about having to cancel our Christmas plans this year. But, in an effort to make the best of our situation, I decided to take the boys to visit Santa at our local mall instead (big mistake!).

I was willing to cough up the money and I was ready to wait in line. But what I wasn't ready for was the less-than-joyful experience:

Santa with missing teeth...a very grumpy sales lady...annoying rules that prevented us from videotaping their Santa experience...a ridiculous price for a picture that did not capture my boys best smiles.

In an effort not to show my disappointment and effectively ruin the boys' Santa experience, Brian and I just graciously smiled while giving over our $21 for a picture we didn't really want.

Fortunately, the boys enjoyed meeting the very sweet Santa. (Oliver didn't notice Santa was missing most of his teeth). Oliver spent time telling Santa about tornadoes. Bennett enjoyed waving to Santa and bravely crawled in his lap once big brother showed him how to confidently do it.

So, this probably won't go down as my favorite family Christmas ever. But, I think the boys won't know much different. And the best thing is, there is always next year!

Picture with Santa 2010

Picture with Santa, 2010

Picture with Santa, 2009

Surgery Planned for Thursday

2011-12-19T11:44:00.000-08:00

I spoke with the Pediatric Surgeon this afternoon. She has still not heard anything with regard to Bennett's labs. I hope to hear one way or the other later today.

At this point, since Bennett's rectum has returned to normal (meaning he can sit, eat and play like he always does), emergency surgery today is off the table. We are very happy to be able to resume our life as normal at this point.

However, we are very concerned about the risk of this happening again, particularly during our travels out of state for Christmas. So, we have made the difficult decision to go forward to surgery as soon as possible.

Therefore, surgery has been scheduled for midday on Thursday. This will include a 2-3 day hospital stay meaning we hope to be discharged from the hospital on Christmas Eve.

We are disappointed to have to do it at the holidays and possibly even risk having to be in the hospital on Christmas.

But it's nice that the hospital we will be at isn't far from home (thank goodness we won't have to be in Dallas for it!). And even better, our family is planning to travel to our house so we won't have to miss Christmas with them, even if we are stuck at the hospital.

Everything could change again if the stool sample results indicate infection. But as of now, this is our plan.

Waiting to hear about today

2011-12-19T08:32:00.000-08:00

We haven't heard back from the doctor about the results of the stool specimens.

Bennett's rectal prolapse did resolve itself this morning on its own. So, essentially, he is back to normal. The issue we face is whether or not we want to go forward with surgery or wait until after the holidays.

Our greatest fear is being out of state and needing to do the surgery. So, if we can, we will elect today. However, when surgery is more of an election, it sometimes means it can get bumped back a day or two to allow for more immediate surgeries. If this is the case, we will probably wait.

We are waiting to hear from the doctor to decide.

ER Visit Completed

2011-12-18T19:10:00.000-08:00

We were able to delay going into the ER until late this morning. I woke up around 8AM (after being awake almost all night long with Bennett's crying and my worrying about what to do about his rectal prolapse). I put a call into the Pediatric Surgeon. I knew that she'd probably advise us come to the ER.
She had a suggestion of one thing we could try to treat the rectal prolapse before coming in (she probably could sense my hesitation and desire to not have to come in if at all possible). She suggested sugar.

When the rectum (or bowel) protrudes through the anus and won't go back in, it can often begin swelling. Swelling of the protruding bowel is what makes the bowel difficult to put back into the bottom without manual manipulation. Unfortunately, even with manual manipulation (read: sticking my fingers in his butt and trying to make his bowel go back in), Bennett's prolapse would not recede, mainly because he feels the need to push it back out again (as Brian says, "that's supposed to be a one-way hole").

Sugar is supposed to help the osmosity of the edema (swelling) go down so that the bowel can return to its normal spot. (Salt can also be used but it's much more painful!)

Over the phone, the doctor instructed me to pour a bunch of sugar on the protruding bowel. "Pour sugar on it like you sugar a cookie" she said. So, I did.

Unfortunately, the sugar-on-the-bowel trick didn't work. So, by 11AM, we were down in Temple at the Children's Hospital Emergency Room.

There, we met with the Pediatric Surgeon who assessed Bennett's situation and agreed that surgery is necessary. Thankfully, like our last hospitalization for this issue, loss of Bennett's bowel does not seem to be an issue. (His sphincter muscle is so loose that it has not cut off blood supply to the bowel yet).

The surgeon wanted to confirm he does not have an infection in his bowels (such as C.Diff). But if the tests come back negative tomorrow, we will head for surgery tomorrow afternoon.

Initially, the doctor wanted to admit us to the hospital so Bennett's condition could be observed while we wait for the tests to come back and for our surgery to begin. But I begged to go home. I couldn't even imagine having to stay in the hospital for 24 hours for nothing more than observation.

Thankfully, the surgeon agreed that I was very observant and could monitor his situation at home. We agreed that we would return home, rest and pack up to come back to the hospital tomorrow afternoon.

If the stool specimen tests come back indicating an infection, we will be forced to treat the infection first before surgery. However, if they come back clear, the plan is surgery for tomorrow. Should the rectal prolapse go back in on its own in the meantime, we may consider rescheduling the surgery until after Christmas. Since we plan to travel this holiday season, Brian and I prefer to get the surgery over as soon as possible.

Either way, it has been determined surgery is necessary.
We shall see what tomorrow brings...

Contemplating an ER Visit

2011-12-18T03:38:00.000-08:00

I heard the music in my dreams but wasn't sure what it was. I kept thinking it would go away but it didn't. I finally awoke to realize: it really was music and I really was dreaming.

It was 4:44am and Bennett had crawled out of his bed, walked into our living room, found the remote and turned on the TV, which began playing the DVD introduction to the 1940's Superman serial that Brian and I had been watching before we went to bed a few hours earlier.

Bennett was out of his bed, which didn't surprise me because I chose not to hook him up to his g-tube feeding bag last night. What choice did I have? He was going to have to sleep on his stomach with his butt in the air so it didn't seem like he would want to sleep on his g-tube tubing.

Bennett's rectal prolapse made its arrival last night around 8pm and now I sit staring at the clock at 6am and realize nothing has changed. Bennett is whining in his bed right now. He's uncomfortable and wants relief.

But this very issue had us in the hospital almost 1 year ago to the day. And it turned out that the rectal prolapse solved itself without any intervention. So, I wonder, will it do again?

I've been told that there is a very seriousness to rectal prolapse, issues with strangulation of the bowel which would mean the bowel would die and have to be cut off. There can also be an overall issue with swelling that can prevent it from going back in.

But it simply may be that the rectal prolapse will spontaneously resolve itself with no help at all. The issue is that Bennett, being 2, wouldn't let us push it back in. It's uncomfortable and makes him want to just push back.

The GI doctor at our local Children's hospital, a doctor I greatly revere and trust, has told me we can come into the ER, if we want. But there isn't much they can do. He feels it will likely resolve on his own but he also realizes that if it doesn't, we will have to have an ER admission (which usually includes a brief hospital stay).

My greatest fear is having to spend a day or two at the hospital for no reason. Hospitals are NO fun. It can feel like prison. Once you're there, you can't leave until they tell you that you can. And hospitals are like nursing homes, everybody has one pace: slow.

So, one does not want to have to spend their Sunday at the hospital unless it is absolutely necessary.
Unfortunately, by the looks of things, I'm afraid we're gonna have no choice.

The doctor is letting me make the call on whether to go to the ER. I am trying to consider everything: will the prolapse resolve on its own? will they be able to do anything at the hospital I can't do at home? will Bennett get more rest at home or at the hospital? will Oliver be ok if we do this? will our being admitted to the hospital delay our Christmas plans? will Bennett need surgery? what is causing Bennett's current bout with rectal prolapse at this point? is it worse to stay home or go to the hospital? why am I having to make this decision? what if I make the wrong one?

I will wait until hospital shift change before I go. (Shift change is the worst because half of the people are trying to exit the building and the other half are just showing up for work.) I'm afraid by the looks of things, our only choice is going to be to be admitted.

Cystic Fibrosis, I really really dislike you.

Family Traditions: Advent

2011-12-17T22:34:00.000-08:00

One of the most fun things about this Christmas is the introduction of new family traditions.

And our new favorite traditions is the lighting of our Advent Wreath. (Much of our new Advent tradition comes from our dear friends, Josh and Lindsay Carney, so I want to make sure I give credit where credit is due! We loved seeing how engaged their children were in their nightly Advent tradition that we decided to do it too!)

This year, we made a homemade wreath with our church and brought it back home to light each night. Although we wait to light a new candle each Sunday, once it's lit, we light the wreath each night after dinner. The center white candle is lit on Christmas Day. The children identify the name of each candle: Hope (Purple, Week 1), Peace (Purple, Week 2), Joy (Pink, Week 3), Love (Purple, Week 4).

The boys are fascinated with fire and love blowing the candles out at the end. (We just have to make sure to keep Bennett's little curious fingers from grabbing the candles when he tries to blow them out. By the way, he still thinks "blowing" out a candle involves some level of spitting on it.)

The boys do a wonderful job listening intently to our 3-minute nightly Advent reading and the reading of our daily wrapped Christmas book from our Christmas Book Countdown.

As a guide for telling the story of why we participate in Christmas, we read a select page from the book "My First Read and Learn Countdown to Christmas."

This book offers daily readings to be read out loud for young children in order to help them understand elements of Christmas (Christmas trees, Jesus' birth, angels, Christmas carols, etc).

The book also offers a prayer that the children will say along with me. Sometimes they are as simple as, "Dear God, Thank you for Jesus. Amen." I love watching my little boys pray.

But the boys' very favorite part of our nightly Advent tradition is the opening of their chocolate Advent calendars. Each night, we open a door corresponding with the date to find a small piece of chocolate. The boys love this part and wait very patiently for this part to come. (We started out with two advent calendars, one for each boy. But Brian and I began to longingly desire a little piece of chocolate each night ourselves, so I found two more calendars at our local grocery store. :))

We look forward to using this tradition as a template for teaching about the Christmas story each year. As the boys get older, we will begin looking for a new book to guide us. But for now, this is a perfect mix of ways to teach the boys about Advent (which means to "wait") and the true meaning of Christmas.

I'm so happy for frozen meals for toddlers!

2011-12-14T08:18:00.000-08:00

America's obesity problem is my greatest savior! I LOVE that companies make ridiculously fattening and high-caloric food for kids. For Bennett: Childhood Obesity, here we come!

For a CF child like Bennett, it's exactly what he needs to be eating on a daily basis. How wonderful to regularly have access to high fattening food - through the drive through and at the grocery store. I have to resist it like the plague but it's the perfect food for a child whose body does not easily absorb fat and whose body needs more calories than the average child.

We are still working on the interest in chicken and french fries. He loves corn (yeah, the vegetable that the human body can't even completely digest - why does a child with digestion problems choose to love to eat a food he can't digest?).

Bennett's favorite condiment is ketchup (Oliver's favorite is mayo). I noticed Bennett was eating very well on his own the other day. I was quite impressed at his ability to stay focused on eating for so long...until I came over and noticed he had touched none of his food. What he was eating with gusto was his ketchup...that has almost no calories! Stinker!

Feeding Protocol

2011-12-11T21:14:00.001-08:00

One of the greatest Christmas gifts to our family this year is Bennett's continued feeding improvements.

It was the middle of the summer that we are at the Baylor Feeding Clinic desperate to get Bennett weaned from his g-tube and eating age-appropriately. And now, sitting 6 months later, Bennett is eating every meal on his own...often asking for food before we have a chance to realize it's dinner time...and asking for the very sandwhich in our hands.

We have stopped using the Baylor Feeding Clinic protocol all together. There was a time several months ago when things were looking very bleak. I was becoming very discouraged and wondered if we would ever find our way out. But, the combination of feeding therapy, the behavior modification protocol and our GI doctor's decision to cut down Bennett's g-tube feedings seemed to help put Bennett over the hump.

I will admit I am still nervous. Bennett has a GI appointment in January where we will get an official weigh-in. The few weight checks that we have done in the last month have shown he is not gaining weight as rapidly as he should be. But, he is not losing weight...and he is eating. The question is, is he eating enough?

Cystic Fibrosis is a terrible long-term disease that will be a constant battle for us, no matter how hard we fight it. (As my fellow CF mom says "Despite your best efforts…it still is hunting you down and trying to destroy you.") So, daily, I am having to learn how to release control. In the area of eating, I am just giving up control and trusting that if Bennett is not gaining enough weight, we will address it when we get there.

While my hope is that he will eventually be g-tube free, I am also willing to resign that if the g-tube is what keeps him growing healthy and keeps him on this earth longer, I am willing to embrace it fully. I want his eating to be as physically and socially healthy as possible. But sometimes, health has to be categorized between what is most important. The social aspects (or lack thereof) of eating can be dealt with over time...but the consequences of a child being underweight and sick cannot.

My goals with Bennett's eating and CF are:
Keep him alive.
Keep his lungs healthy.
Keep his body growing and weight up.
Keep him enjoying food.
Keep him eating on his own.
Get him off the g-tube.

I finally came to the point this fall where I'm ok with the first three goals...even if that means giving up on the last three. Fortunately, we've been able to hit 5 out of the 6 so far. Let's hope our next weigh-in proves this to be true. And my wish for next Christmas is we can hit all six!!

Turkey Time

2011-12-11T20:57:00.000-08:00

This is a post that should have been posted in November but I couldn't not post it, even if it's a month late.

Oliver's teacher asked him (and his classmates) to decorate four "feathers" for his class's "Thankful Wall-Turkey."

Oliver dictated to our babysitter the things he was thankful for and she wrote them on the feathers he later helped color. Here is just some of what he said he is thankful for: "Mango" the dog, gusting winds, fire trucks, ambulances, tractors, cats...

...tornadoes, waterspouts (a tornado over water, in case you didn't know), Diet Coke and Pepsi (both of which he never gets to drink), M&M's, markers, slides, swings and fire ants.

Um, I mean, who isn't thankful for fire ants?? Hearing what a 4 year old is thankful for reminds me just how much I have to be thankful for!

Family Christmas Tradition: Santa's Letter

2011-12-07T19:05:00.000-08:00

Ironically, after I spoke with a young woman this week about the need for gently used toys in the giving closet at our local Children and Family Services office, an important request from an Important Person arrived in our mail box.

This special letter arrived in a special envelope with the names "Oliver and Bennett" on it. Oliver was in awe when he found out who had written him and Bennett. (Bennett, on the other hand, being oblivious to the joys of Ole Saint Nick, couldn't have cared any less).

Santa had a very special message for both boys. So, Oliver sat on the couch to listen intently as I read the letter to him.

In the letter, Santa described his intentions and his desire to bring the boys some new toys this Christmas Eve. But Santa also indicated he was concerned that the boys might not have room for these toys since they have so many toys already.

Santa shared about how Jesus cares about others and how he would like for Oliver and Bennett to care for others too. One way Santa suggested that Oliver and Bennett care for others is by giving some of their toys to boys and girls who don't have toys to play with.

It was evident in the letter that Santa knows boys and girls quite well. He made a four point outline of how Oliver and Bennett could care for others while also making room for new toys: the boys would need to go through their toys and find 20 toys to part with. I was instructed in the letter to bag these toys and take them to the little boys and girls who needed them.

To my surprise, it took Oliver no time to organize and reevaluate his toys. He quickly began pulling out toys to a corner of the room, toys he intended to give away.

I began to notice, however, as toy after toy was being pulled out and placed in this corner that these toys were Bennett's toys. No wonder Oliver was organizing so quickly! And no wonder Bennett had found himself a fun little corner with plenty of toys to play with!

I patiently allowed Oliver to continue organizing his no-longer-needed toys into the corner but I gently encouraged him to find toys of his own he was ready to part with. There were certainly a few beloved toys that Oliver was unwilling to give away. But for the most part, within 45 minutes, Oliver had gathered up 20 of his own toys to give to needy children. I was very proud of his efforts and praised him for being thoughtful.

I think this will be a regular Christmas tradition - not just the giving 20 toys away - but the practice of giving at Christmas, in general. I hope that next year ~~I can~~ Santa can challenge Oliver (and Bennett) to love others in new age-appropriate ways such as with Operation Christmas Child or World Visions' Goat and Chickens Gift Giving Catalog.

And my hope is that, in doing this, Brian and I continue to be challenged ourselves to give to others as we watch our little children obey the commandment to "love one another"(...even if they still need a little encouragement from Santa Clause.)

Christmas Tradition: Christmas Book Countdown

2011-12-02T22:25:00.001-08:00

Now that the boys are getting older, we have begun to implement a few new Christmas family traditions we hope to continue for many years. One of our first traditions that we began this year is our a Christmas Book Countdown to Christmas.

It's hard to reassure an excited 4 year old that Santa is coming soon...but not tonight...or the next night or the next night or the next. However, beginning this year, we borrowed a great tradition from my favorite children's illustrator Sarah Jane Wright. For 25 days in December, there is a wrapped gift under the tree, each with a number corresponding with the day it should be open.

Every morning, Oliver and Bennett run to the tree to find the day's number. They unwrap each gift to discover a new (or old) Christmas book inside.

We started collecting Christmas books several years ago buying a few each year. We now have 25 of them (four of them are recordable books from the books grandparents and great grandmother). We love watching the boys get super excited about a book. And it is so much fun each day to read as a family a book about the season we are celebrating. While the boys are enjoying books about Santa, Rudolph, the Polar Express, they are also enjoying just as many books about Jesus' birth and the real reason for this Advent season. Books tell stories and it's nice to be able to tell the story of Christmas to the boys in the most age-appropriate way!

No, you are grieving.

2011-11-25T22:46:00.000-08:00

"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

2011-11-21T21:59:00.000-08:00

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

2011-11-16T21:52:00.000-08:00

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

2011-11-14T19:53:00.000-08:00

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

2011-11-12T20:59:00.000-08:00

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

2011-11-09T18:48:00.000-08:00

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

2011-11-08T20:45:00.000-08:00

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!

My Hope for Bennett

2011-11-07T19:05:00.000-08:00

This is my hope for Bennett, exactly.

G-tubes in the News

2011-11-06T19:07:00.000-08:00

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

2011-11-04T22:02:00.000-07:00

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!!

Halloween 2011

2011-11-01T11:51:00.000-07:00

Bennett and Oliver had a great Halloween this year!! The both really loved it!

It's no secret Oliver loves tornadoes. He loves to read about them, talk about them, draw them and pretend to be them. So, clearly, there was no other costume we could even imagine him wearing for Halloween this year!

But he wasn't just any tornado... (the tulle on his shoulders is the spinning thunder clouds.)

He was an F-5 tornado - the most powerful tornado that can be!!

Check out the detail of the costume? The tornado runs from the bottom of his left foot all the way to his shoulders. The brown tulle around his ankle is the "spinning dirt."

The little items on the costumes are all things that have been sucked up by the tornado (a tree, a tractor, a horse, a fence, a police car, etc.)

One of the things I love about the boys still being so little is they will still let me dress them up in theme costumes. So, what better goes with a tornado than Toto from the Wizard of Oz?

In case you don't remember, here is what Toto the dog looks like.

Here was our Toto. (Bennett would say "woo woo" for "woof, woof".)

I cannot take credit for these costumes. The boys' costumes were meticulously and lovely handmade by their babysitter and our good friend, Margaret! (I have a whole upcoming post about how much we love Margaret!!) We cannot say enough with regards to how much the boys loved their costumes this year. Oliver, especially, has shown how well made they are. He cannot help but put the costume on and spin around and around saying, "I suckin' up things, mom! I suckin' up things!"

Bennett did a great job this year. Unfortunately, on our third house, a scary plastic "dead" guy (the kind you buy at Walmart) came up from the ground and scared Bennett tremendously. So, despite that we kept telling him the next houses were not scary, that was his third and last house he trick-or-treated at this year. We found he was scared by jackolanterns and kids with masks (understandable!). Hopefully next year will be better!

Oliver did a great job this year. He knew the drill and walked up to neighbors' doors with confidence. We were really proud of him. He came home with a bucket full of candy - candy he won't likely finish until Easter of 2012!

Halloween is one of our favorite times of the year because we get to see our neighbors again, those who hide out in their air conditioned homes during the sweltering hot days of summer that lasts from May until September!

The boys with our neighbors and friends, Noah and Lucas.

The Gamel Family - Halloween 2011

Happy Halloween!! See you guys next year!

Texas State Fair 2011

2011-10-28T22:17:00.000-07:00

You can't live in Texas and not attend the Texas State Fair, the largest state fair in the United States. So, this year Brian and I decided to go as a family!

One of the most fun parts of our trip for the boys was riding the DART train to the fair. Both boys loved riding a train!!

You can't go to the Texas State Fair without getting a family picture next to "Big Tex," the 52 foot tall icon of the Texas State Fair that has been there since 1952.

The boys favorite part of the fair was the petting zoo (which turned out not to be a "petting" zoo at all by the kids still had fun).

Oliver feeds a camel while Bennett looks on.

I finally figured out the reason why there were all these signs that said, "Do Not Feed Animals Using Paper Cups."

Yeah, stupid goat got it and wouldn't let go.

And it was gone like that! Oliver was SO upset!! I had to reassure it him it was funny...but explained this is why Mommy should obey the rules!!

Feeding the cow.

These piggies helped us teach the boys about how baby animals get fed. Thankfully neither child connected that to human mommas. I wasn't prepared for that conversation.

Oliver particularly enjoyed the fair so much this year. He was hot so he wanted ice cream.

Everything at the Texas State Fair is fried. So, of course, so was the ice cream!

My special treat was enjoying some fried Oreos!!

Oh.my.gosh. they were SOOOO good! Wow! Think Oreo funnel - that's what they tasted like!!

Unfortunately, for whatever reason, the Texas State Fair doesn't have ~~many~~ any rides for little kids. We didn't realize this but decided not to let the boys return home without some traditional fair fun. So, we gave Oliver a chance to play the pop-the-balloon-with-a-dart-game.

Our smart boy ended up popping a balloon twice so he got a stuffed animal of his choice.

He was sweet to give Bennett one of those toys. Bennett ended up using it as a pillow during nap time. All of the fun at the fair pooped him out.

Pumpkin Patch 2011

2011-10-24T21:18:00.000-07:00

This past weekend, we took our annual trip to the Pumpkin Patch. We all had tons of fun, especially now that Bennett is older now!

Sweet brothers.

Despite my greatest efforts to console him, Bennett was not interested in sitting with his best friends in the hay.

Daddy and the boys feed the animals.

Momma and Bennett

Momma and Oliver

Daddy and Bennett

Bennett was SO excited to ride the "train" (and the word train is used loosely...also known as several wagons hitched to a tractor). But Bennett didn't care. He LOVED it!

Daddy walked with the "train" since there weren't any seatbelts.

Daddy and Oliver watch the kiddie maze. (Notice the maze is made of wood, not corn. Our Texas corn was burned to a crisp this year.)

The Duck Races: the boys favorite because water was involved!

"Go, Ollie, Go!"

"Bennett, smile for the camera!"

After that, we participated in our favorite activity of the day: the Hayride!

Best buddies on the Hayride.

Bennett kisses his friend Lilli.

What a wonderful day we had at the Pumpkin Patch!!

Drawing Tornadoes

2011-10-21T20:11:00.000-07:00

Did I mention Oliver *loves* tornadoes? Well, every week from school, I find at least three pictures of tornadoes that Oliver has drawn during his free time at school.

A few weeks ago, I asked him to draw me a tornado picture and describe it. What I found was his picture was very detailed and accurate. It may look like scribble but see what he's drawing!

Over time, Oliver's pictures have become more and more detailed. He loves drawing pictures of tornadoes. We watch an episode of StormChasers every morning at breakfast. We own every tornado book that we know exists for preschoolers. Oliver regularly uses words like "downdraft", "waterspouts" and "vortex" in his vocabulary. It's pretty funny.

Pictures of our ER Visit

2011-10-20T21:34:00.000-07:00

I was exhausted last night so I didn't have time to post pictures from our exciting ER visit yesterday morning. But here they are...

"Look Mom, no ~~hands~~ g-tube!

What does it look like with no g-tube?? This is a picture of Bennett's stoma (the opening that goes from the outside skin all the way down through his muscle and stomach wall. The hole is there but is tiny. The doctor had to dilate the hole with the use of several wires and tubes. The area is typically slightly pinker than the rest of his stomach. The skin that grows around the g-tube is called "granulation tissue" and is very common.

Thankfully, the treatment room at the Pediatric Surgeon's office had a TV and cartoons in it. This was wonderful as it distracted Bennett during our wait.

Fortunately, I had gummy bears in my purse to feed to Bennett while we waited. Bennett missed both his breakfast and lunch feeds during this time. So, he ate gummy bears all morning.

Bennett explores the room.

Clearly I couldn't take pictures during the procedure as it took two nurses to hold him down, one doctor to insert the wires and me to comfort him. All of the crying he did knocked him out on the way home...about the time the Tylenol kicked in.

My sweet boy had it rough!

A souvenir from the day's adventure.

The new g-tube. Ah, so happy to see you in your right place once again!

Where's Your G-tube??

2011-10-19T22:49:00.000-07:00

We had a scare this morning.

Oliver usually wakes up and gets ready for school before Bennett gets up in the morning. In fact on Wednesdays, our babysitter Margaret usually arrives early enough to wake up Bennett so she can feed him while I take Oliver to school.

So, imagine my surprise when I hear Bennett's voice in the kitchen to which I hear Margaret ask, "Bennett, who got you up??"

When I realized Bennett was awake and Margaret didn't seem to know anything about it, I rushed out of the bedroom in hopes to hear the answer to Margaret's question.

Oliver proudly announced, "I did! I got Bennett up!"

I laughed and said, "well that's really great...but, Bennett, you're supposed to be tethered. How did you get out?"

Bennett is typically connected to his g-tube all night long as he is fed through his feeding pump. We usually connect him to the tube at night and unconnect him in the morning. Since he can't undo his tube, he can't physically get out of bed until we unhook him.

I didn't really want to know the answer to my question. I had really hoped that maybe the mic-key extension had accidentally unhooked from his g-tube...or that maybe Brian had unhooked him.

But my greatest fear was realized when Margaret lifted up Bennett's shirt and we saw his g-tube was nowhere to be found. (...which sounds familiar, huh??)

Since it's not uncommon for g-tubes to come out, I reacted immediately and tried to replace the g-tube. But it was clear that it could not be put in. The g-tube stoma (the g-tube opening) had already begun to close up, so tightly that his g-tube could not easily be replaced.

I realized that the g-tube had probably fallen out hours ago, which meant that the area was healing incredibly quickly. We have been told that g-tube sites can close within 4 hours.

I wasn't even fully dressed and had an appointment planned for the day. But it didn't matter, I knew we were going to have to go to the ER.

We rushed to the ER and hoped the doctor there could put it back in. But it was evident that he could not. We were told that we needed to go asap 30 minutes away to meet with the Pediatric Surgeon on call.

So, we had to immediately get in the car and drive to Scott and White in Temple. There, the Ped Surgeon had the correct materials to put Bennett's g-tube back in without requiring surgery.

Unfortunately, it was very painful. But it got done and we are thrilled.

It was interesting seeing how the doctor dilated the stoma before putting the tube back in seeing as the opening in his tummy was closed shut. The doctor could fit only a tiny wire into the stoma. So, the Pediatric Surgeon first inserted that tiny wire. Then, she placed a small plastic tube over the wire and inserted it into the stoma. After that, she placed a slightly larger tube into the stoma. Each time, the hole was made bigger and bigger until it was big enough for the g-tube. Unfortunately, because the area was closed so tight, there was alot of blood and screaming (they didn't give any pain meds because they said they didn't think it would hurt...yeah, right).

My heart sank for our little guy. I hated that he had to go through all of this for something so innocent as losing his g-tube. It turns out (or what we suspect is) that, while sleeping the night before, Bennett moved to a certain spot in his bed where the feeding bag tubing got stuck between the mattress and his bed railing causing the g-tube to be yanked out while Bennett was asleep. This likely happened when Bennett didn't know, which is why he did not cry.

I hated that he had to go through all of this today. But I was so thankful that my biggest fear, going under anesthesia for surgery, was not ultimately realized.

Still, I wanted to cry today. I felt deeply frustrated and helpless by such a drastic turn in my day. This has happened so many times before that it shouldn't have surprised me, or even bothered me, for that matter. But it did bother me.

I think it was hard because I have just recently begun to tell myself it's ok to start dreaming again...to start getting involved in life, to start committing our family in activities, to start picking up my own passions again. But today's curve ball felt like the rug was temporarily pulled out from underneath me.

It reminded me of the so many times before where we had been in this situation - needing to stop what we're doing and go to the ER, being admitted to the hospital suddenly, finding ourselves no longer in control of our life, at the mercy of Cystic Fibrosis complications.

I felt a sense of betrayal by God today...a feeling I haven't felt since the first months of Bennett's life. I wanted to beg God to not make me do this...to not make me care for a child with special needs. "God, I don't want to do this...I don't want to go through this for the rest of Bennett's life." I wanted to ask God to release me from the pain, tears and frustration of living at the whim of an incurable and devastating disease that is hurting my child. "I can't bear to watch my child suffer."

But today, on the way home from Bennett's procedure, I was able to fall back on the memory of all of the amazing support our family has received over the last two years - from family members, friends and strangers alike - all who have shown us the love of God throughout this journey.

Even this weekend, while on an impromptu trip to my Alma Mater, a sorority sister I haven't seen in years found me out of the crowd and gave me several big long hugs. Her words: "I read your blog." That's all she needed to say. I could see it all in her eyes and feel it in her hugs. Her empathy and tenderness was incredibly encouraging. Little did I know how much I would need that encouragement only days later sitting in a treatment room waiting for my son's procedure to begin.

Today, I was reminded of the quote I once saw on a church sign:
God doesn't call people who are qualified.
He calls people, and then He qualifies them.

Cystic Fibrosis is a long road. We're at the very beginning.
But I choose to trust God in this journey, that He will continue to give me strength.

He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:29-31

Update: Where are we??

2011-10-17T20:32:00.000-07:00

This adorable paper pumpkin was made by the boys with our very creative and thoughtful babysitter, Margaret, who kept them one evening. Can you see Bennett's scribble on this pumpkin?

I'm here! I'm here! I apologize for taking a break from blogging. It is honestly because we have been so busy living life that I haven't had a chance to blog about life!

I have lots to share in pictures which I hope to post in the coming days. But I thought I'd share a bit about how Bennett is doing.

He is doing really well. His C.Diff symptoms are completely gone (at this point) and he has started eating much better.

When I complained to Bennett's GI doctor last week that I am concerned about Bennett's lack of appetite, the GI doctor reexamined what we are feeding him. Once he learned we are still feeding him 66% of his calories through the g-tube, he suggested we cut it down by half. We are now feeding him only 16oz of 30 calorie formula for 4 hours per night (and nothing during the day).

I feel nervous about this decision simply because we have worked so hard to get Bennett up to the 50th percentile with regard to weight (the recommendation for CF children). But, our GI doctor has shown to be wonderfully competent and I believe he understands the risks involved.

We are going to try this for about 4 weeks. If we see a dramatic weight loss, we'll have to start g-tubing him again. But we are hoping that cutting down his feeds will make him hungry enough to eat more orally. I've already noticed that he's not as "chunky" as he used to be...but it may be that he's growing taller and getting older. Fortunately, we are seeing him more hungry, which is great.

Ultimately, I am having to learn how to be patient and trust God in this. I believe Bennett has some of the best medical professionals caring for him. So, I am trying to trust Bennett's pediatrician, his CF doctor, his GI doctor, his dietician and his feeding therapists as they guide us through caring for Bennett's numerous complications due to Cystic Fibrosis (CF, oral aversion, lack of hunger, GI issues, etc.).

I trust that nothing we do is irreversible and everything we do is worth trying at some point. I am very concerned that Bennett may never get off his g-tube and may never be able to eat enough to live without it. But I cannot go there. I just have to keep relying on Bennett's doctors to come up with creative suggestions on how we can deal with the delicate balance between keeping Bennett well and getting him hungry enough to eat on his own.

For now, I am trusting that this issue is in God's hand and I am trying to focus on other things in life...such as enjoying all of the fun things that the Fall season brings: football games, birthdays, pumpkin patches, crisp weather and Halloween! Pictures to come!!

It may be hard to see but between the green lines on this first pumpkin are Oliver's red scribbles. In case you don't know, those red scribbles are supposed to be tornadoes. :)

Cheese!

2011-10-09T12:29:00.000-07:00

The other day, Oliver had his first "picture day" at school. I asked him to "show Daddy" how he smiled for the camera. Oliver flashed me a sweet smile. Then, I looked over to see Bennett was showing me his sweet smile:

This sweet smile had me cracking up last night as I tried to take pictures of Oliver and his first real block masterpiece. Each time I snapped a photo, I found Bennett's big head right in the lens of my camera.... (Did I mention Bennett is an entertainer??)

Say "cheese"!

"Ok, get out of the way, Bennett."

"Bennett, move, baby."

"Honey, this is Oliver's turn..."

"Ok, silly boy, I'll take a picture of you!"

"Alright, Oliver, perfect picture!"

So, on to Oliver's masterpiece....his first creative block structure he built all by himself...

...most impressive because he had apparently modeled it from memory to look like the Empire State Building.

Pretending

2011-10-06T20:59:00.000-07:00

Bennett has quite the personality these days. He, every bit, plays the role of the baby in our family. He is funny and loves to entertain.

One of my favorite things about Bennett right now is his genuine love for pretending. Bennett enthralls himself with his pretend play. Thankfully, today, Bennett let me photograph his feeding "Dog" some enzymes. I loved when he kept licking his lips and saying "nom-nom-nom" as though the dog was actually licking the spoon.

Man alive, I love seeing this boy grow up! He is just the joy of our life!

Dog, take your bites!

"Nom-nom-nom-nom..."

Dog waits patiently to be fed.

Good eating, Dog! (Bennett *loves* kissing. At any point during the day, he will lean in and kiss my leg or hand. He also loves patting others as a way to say, "I love you." Dog was no exception today.)

No C.Diff?

2011-10-06T01:34:00.000-07:00

We heard back on the C.Diff test on Monday. Negative.

It's pretty funny when you feel frustrated to get a negative C.Diff test. Who wants a positive one? I guess someone who wants to have answers as to why their child isn't eating, why their child is vomiting and why their child's poop isn't right.

There are a couple of other reasons why Bennett would be struggling with GI symptoms but the C.Diff issue is obviously our first thought because he has struggled so much with this infection. The reality is it could have been a virus (very common in kids). It also could be a malnutrition issue, in other words we may have failed to give him the proper amount of enzymes for the food he was ingesting. Or, this could have been something totally different.

After having to stop Bennett's feeds all weekend (no tube feeding at all; just pure pedialyte all weekend), I was desperate Monday to get the C.Diff test back and get his antibiotic again. So, it was no surprise that when the C.Diff test came back negative (and therefore no need for antibiotics), I was really concerned.

The GI doctor suggested that we give him Bentyl (or Dicyclomine) to help with stomach cramps. And, he suggested, that I bring Bennett in to see him this week.

So far things have been going wonderfully since we started his feeds back on Monday. Bennett's hunger has returned. We haven't seen any signs of vomiting or stomach cramping. We are giving the Bentyl but wonder if it's even ncessary.

Maybe all Bennett had was a little stomach virus. CF kids get normal stuff too. But it's so very hard to differentiate between normal and not normal. It's hard to take him off his feeds completely, even when he's hurting, because he so desperately needs to gain weight consistently. And it's very hard to know if his refusals to eat are due to lack of hunger, nausea, oral aversion or behavior.

I'm thankful for the confidence I have in our GI doctor and the patience he has with us to figure this out. I feel nothing but supported by him, which is a tremendous feeling since not all of our doctors have been this supportive of me as a mother and my intuition.

Usually, I am right. Usually it's C.Diff. But this time, it wasn't....which I am glad. Thankfully we will meet with GI today and see if he can't help us figure out where to go from here. I really despise Cystic Fibrosis' GI issues. Eating and poop issues are no fun for this momma.

Bennett's 2nd Birthday

2011-10-02T07:19:00.000-07:00

We celebrated Bennett's birthday Friday at home after dinner with just the four of us. We are going to have a big celebration later in October when the boys have a joint birthday party (since Oliver turns 4 at the beginning of November).

Daddy lights his candle. (Bennett is very sensitive. So, he started to cry when I told him to be very careful and not knock over the cake or touch the fire. Poor little guy falls apart at any stern word spoken to him. He has such a sweet spirit.)

Blowing out his candle.

Our two year old!! So big!

Unfortunately, Bennett's C.Diff is back (yes, just four days after we thought it was gone). This is very well why he is not eating as much as he used to. But it was definitely why he didn't want even a bite of his cake.

That's ok, the rest of us enjoyed the heck out of the cake. Hopefully we can get this C.Diff taken care of before his big birthday party in a few weeks so he can enjoy his cake and eat it too!

Happy Birthday, Bennett Brinson Gamel!!

Mama's Thoughts: Bennett Turns Two!!

2011-09-30T20:52:00.000-07:00

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

2011-09-30T17:52:00.000-07:00

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

2011-09-29T21:01:00.000-07:00

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

2011-09-29T19:51:00.000-07:00

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

2011-09-27T18:15:00.000-07:00

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

2011-09-26T13:18:00.000-07:00

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.

2011-09-23T11:45:00.000-07:00

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

2011-09-20T20:25:00.000-07:00

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

2011-09-17T19:59:00.000-07:00

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!!