In It For Bennett: Our Journey with Cystic Fibrosis: September 2010

30 September 2010

Pictures: How Bennett Has Changed In One Year

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

Breck's Thoughts: Tears of Joy...and I just had breakfast.

We're only a few hours into our day and I'm already tearing up.

We greeting a normal Thursday with joy over knowing hope of better health exists in a bottle of antibiotics. The past few days had been really bad for us. There is nothing like having hope.

Then, one of our sweet speech therapists (who comes every Tuesday and Thursday) came bearing a gift she paid for out of her pocket for a child she hardly knows but already loves.

The comments on the blog and calls from family and friends are very touching as there is genuine excitement over Bennett having made it to his first birthday.

I'm in a place of both grief and thankfulness as I recount this day one year ago and what our little guy has been through.

And this morning, our good friends who are busy with their move to Costa Rica (see the planes in the background, they are actually moving today!) decided to wear Bennett's shirt in honor of today.

Such sweet goodness is already overwhelming me.

Thank you. God is good.

P.S. Bennett is feeling at about 60% today, preferring to be held or sleeping. But we know he should feel better within 24-48 hours...just in time for his celebration this weekend.

The Almost Best Birthday Present!

{Edit: Breck just spoke with the Nurse Coordinator at Bennett's CF Clinic to let her know about his test results. We know C. Diff. is common for CFers because we have met quite a few CF moms online. However, when Breck asked the Nurse Coordinator whether or not they see many CFers at their linic with C.Diff., she replied, "No. It's just another way Bennett is special." Yep, we think so too. :)}

The Almost Best Birthday Present?....

...finding out why Bennett is so sick!

As we expected the minute we started seeing symptoms last Friday, Bennett DOES have C. Diff. (Clostridium Difficile).

That means, the bacterial infection that Bennett was treated for about 6 weeks ago has returned. C. Diff. is a pretty nasty infection that causes flu-like symptoms. However, if left untreated can be very serious, even fatal.

So, we are very happy to hear Bennett's symptoms are not a virus. He has been really sick but should feel much better within a day or so.

Cystic Fibrosis doesn't cause C. Diff. However, those with CF do have a higher likelihood of having the infection - and keeping it.

It can be very difficult to get rid of, which what the "Diff" in C. Diff. stands for...difficult. We will continue to monitor the infection and try to be aggressive with treating it.

But we are just thrilled to hear he DOES have it. Thank goodness for antibiotics!!

Breck's Thoughts: Happy Birthday and Get Well Soon

{EDIT: Bennett's doctors still feel his symptoms point to a virus. However, a stool culture and C. Diff. test may show otherwise. Unfortunately, we won't likely be getting those tests results until Thursday - Bennett's first birthday.}

I had another good cry a few days ago. It always feels good to cry.

Bennett was on day 3 of being sick (we are going on day 6 at this point) and we were getting more concerned that it wasn't just "normal" baby sickness.

Bennett's old symptoms had come back - vomiting/not tolerating his feeds, abdominal pain and overall irritability. Add to that: fever, mucus-y diarrhea and rectal prolapse.

So much of me wanted to say, "It's nothing. It's normal. Kids get sick. So what?"

But, despite my greatest efforts to reassure myself, something inside me felt these symptoms were classically Bennett-CF-ish and needed greater attention to them.

We had been to the doctor a few days before and were concerned we should go again. The last thing we wanted was to waste our time for another appointment just to be told "it's nothing." And yet, the worst thing would be for Bennett to continue to suffer should something really be wrong.

Should we go to the doctor again? Are we missing something? What if it's serious? What if it's not? What does this mean if he's sick? Are we at the beginning of another few months of sleepless nights and a child in pain?

It was just all too difficult to handle at once.

The day before, we had missed taking him to get his first year birthday pictures in Austin. We knew we faced missing an anticipated date night to the Symphony on Tuesday (which we did miss, by the way). And we knew that Bennett will likely miss his own birthday party later this week if he doesn't get better soon.

I was sad that things were being cancelled. But that wasn't the reason I cried.

I cried because, in the midst of this new stress, I was grieving. Only one year ago this week, similarly, our plans were being changed and doctors were being called - Bennett was being born sick.

We have learned that, unlike Oliver, when Bennett gets sick, it seems to cause a fundamental shift in our family and schedule. We can't go anywhere and everyone in the family hunkers down for a long road. For Bennett just doesn't seem to get "kinda" sick. His illnesses always seem to last longer, be more serious and caused him more stress.

Sometimes I think it's wild how nuts Brian and I both get over Bennett being sick. Why can't we just calm down and allow it to "run its course," I wonder.

I have recently realized there are several reasons why Bennett being sick - even for minor things - is so overwhelming to us:

First, it brings back recent memories of frustrations, hospitalizations, additional medications and doctor's visits. All we have really known, so far, about Bennett being sick has been that it has been very serious. So, like Pavlov dogs, we become immediately alarmed when we find Bennett showing symptoms of illness.

Second, we are very well aware that, with CF, that which is benign can turn into something serious. And that which seems serious, can be very benign. With Bennett, a cold can be just a cold, or can be pneumonia. Diarrhea can be the stomach bug, or can be a blockage. Weight loss can be nothing more than that, or an admission to the hospital. Symptoms can either be very serious or completely unconcerning. It's terribly hard to know which is which.

Third, we sometimes feel like nobody is in control over Bennett's health care. Three of Bennett's specialty doctors live two hours away so its not very feasible to jump in the car and come in for a quick sick appointment. And despite that his Pediatrician is typically in town, this time, Bennett's Pediatrician is out of the office until Thanksgiving. So, at this point, we are working with another Pediatrician who doesn't know CF very well, or Bennett at all. It is very scary to be the "eyes and ears" for the doctors who are far away and to interpret all that we know for the Ped doctor who is trying to "catch up" on his case. It can feel like nobody is in control.

Fourth, we are already worried alot regarding Bennett on a daily basis. Adding other things can feel downright unbearable at times. We are constantly wondering if he's gotten his enzymes, therapies, vest treatments, etc. on a daily basis. We are always listening and looking for signs of illness (fast breathing, coughing, runny nose, etc). Our schedules and routines are ever changing as Bennett gets older and his medications must be adjusted. It can all be alot to handle within a normal routine of a day. Adding sickness is not only inconvenient, it can be difficult to juggle on top of everything else.

The bottom line is, Bennett getting sick can be overwhelming. And that's worth a good cry.

But my tears are usually the words I cannot speak. They force me to a place where I must listen to my heart and feel my emotions.

My tears remind me that something matters. The health of my child, the peace of my family and the excitement of life without illness matters.

But I live in a broken world where health and peace are not promised. So, I grasp to what I know about God even more during moments like these.

My favorite Bible verse as a little girl is still the one I know by heart the most today. And its the one I am using remind myself that I don't have to be in control all the time:

What time I am afraid, I will trust in You. Psalms 56:3

I know Bennett will get well soon, one way or the other, I just wish it wasn't so downright painful.

Sick Boy

We visited the doctor on Sunday. It was good to be reassured that Bennett was looking good, even though he felt horrible. The doctor (the second doctor we visited in 4 days) agreed that Bennett's symptoms were consistent with the stomach bug but we took in a stool sample to be sure its not something else. Of course, time will tell, as well.

Bennett's rectal prolapse has returned but is most probably being caused by diaherra. He is handling more of his feeds but still vomiting. We expect that once this illness runs its course, all symptoms will subside.

Below are pictures of Bennett and Dad hanging out on this weekend:

Another visit to the doctor today.

Bennett saw the doctor on Friday and we'll be returning today for their after-hours clinic today. He's not worse, just not better. He still has fever and still not handling his feeds. The main concern from the doctors are whether or not he's dehydrated. Since we have the g-tube and can feed him pedialyte through that, he's doing fine. We're just anxious to get our boy better...especially in time for his birthday later this week!

Gastroenteritis

We took a late afternoon trip down to the Pediatrician's office yesterday. The Pediatrician (filling for our regular Ped who is out for the next 6 weeks) believes that Bennett is either suffering from C. Diff. or more likely gastroenteritis (just facing name for the stomach bug).

We placed Bennett on clear fluids last night and he has done well. He continues to have low grade fever but hopefully tylenol will help.

We will bring a stool sample on Monday to have tested for C. Diff. just in case. But for now, we're hoping its a virus that will disappear in a few days.

Old Symptoms Return

Bennett has been doing really really well since the middle of August...about 6 weeks now. It has been glorious!

But a few days ago, we started noticing Bennett began projectile vomiting returning. Then, we started noticing cramping associated with bowl movements. Today, Bennett has a fever.

Breck is wondering if possibly Bennett has C.Diff again (since these symptoms all went away when it was discovered last month) and have strangely and abruptly returned. But maybe it's something else. We aren't sure.

Since it's Friday, we've made an afternoon appointment to have it checked out.

Oh, Cystic Fibrosis, how you keep us on our toes!!

Making the Best Out Of It

As we are approaching almost a year of life with Cystic Fibrosis, we have begun looking at ways we can better fit Bennett's health needs into our life. You might say it's a sort of "make-lemonade"-or-"find-the-silver-lining"-in-the-situation mindset...an effort to make the best out of our situation!

So recently, we realized that if we were going to have to go to the doctor so often, we ought to blend our out of town trips with seeing friends we don't often get to see. On Monday, before Bennett's appointment, we met up with Breck's childhood friend Carrie at a little cafe nearby for lunch. Carrie graciously came with us to Bennett's appointment (both for company and to help with Bennett). We actually forgot to get a picture of Carrie to post but having her company was SO much fun and much appreciated!! It certainly made a mundane doctor's appointment much more enjoyable!

Here's a picture of Bennett at his feeding clinic evaluation earlier this week. Bennett really liked playing with this little pig toy. It played a song in Spanish which Bennett enjoyed. :) Breck's favorite "toy" in the room was this itty-bitty chair. It was the perfect size for Bennett and is typically used for therapy.

After Bennett's appointment and before we returned to Waco, we met Aunt Brooklyn for a cupcake and soda. Bennett *loved* standing up in the booth while we chatted. It was a nice break before the two hour ride home, in which Bennett fell asleep.

A thank you (and another missing picture) goes out to our friend, Lindsay, who watched Oliver all day while we were in Dallas. She made it so that we didn't have to drag Oliver around with us all day long. We are so thankful to friends and family who make dealing with Cystic Fibrosis just a tad bit easier.

Learning to Drink

As mentioned in the previous post, Bennett really is getting very close to being able to eat and drink one ounce (the minimum requirement to begin the Baylor Feeding Clinic program). Here's what happened on Tuesday:

During snack time with Oliver, Bennett tried a few cheerios and a graham cracker. We were just delighted to see him interested in food. So, we offered him a cup of water. It took a while but eventually he began to show interest in it too.

Ah, refreshing!

This isn't that great of a picture but it shows how much water isn't making his mouth! Half of it is running down his chest. (Notice the cheerio stuck on his tummy.)

The "double hand" effort.

The "one hand + one arm" effort.

Turning it upside down...

...watching the water run out.

Very interested in the now-soaking cheerio.

Giggling at mom's excitement of her big boy's use of a cup! Good boy!

Baylor Feeding Clinic Evaluation Results

We have a very good visit yesterday at the Baylor Feeding Clinic for Bennett's evaluation. He was evaluated by a Nutritionist, a Speech Therapist and a Occupational Therapist to see which of their three programs (day, outpatient and inpatient) for which he qualifies. It is through this evaluation that we were able to determine from the evaluation is that there are three steps to weaning a child off the g-tube.

The first step is traditional speech and occupational therapy. The Baylor Feeding Clinic calls this their "outpatient program." This is essentially what we are already receiving through our at-home therapy. A speech and occupational therapist currently visits Bennett twice per week to work with him to lessen his oral sensitivity and encourage him to explore new textures of foods.

The second step is speech and occupational therapy with the use of behavior modification during an intensive 5-week Day Program. This program requires that we live in Dallas for 5 weeks and visit the clinic from 9-4pm every day. The goal of this program is to begin to transition Bennett from getting most of his calories from his feeding tube to getting most of his calories from oral solids and liquids. Much of this will be done by teaching us, the parents, how to offer the therapy when the professionals aren't around.

The third step is using speech and occupational therapy as well as behavior modification during an equally as intensive 5-week Inpatient Program. This program will require us to move to Dallas and live in the children's hospital for 5-weeks. It is our hope that by the end of these 5 weeks, Bennett will be fully independent with his eating of solids and drinking from a cup! We will not have to go to this step if he can become independent with the Day Program. But this is the ultimate last step of the process.

We learned some great information while we were at the evaluation. Some information was encouraging to hear. Some information was disappointing to hear.

It was disappointing to hear that, due to age, Bennett actually does not qualify for their day or inpatient program yet. Apparently they forgot to mention to us over the phone their highly acclaimed behavior modification program (which is used in their day and inpatient programs) cannot be used until the patient is 15-18 months. Since Bennett is not yet a year old, he is still too young for them to use much behavior modification to encourage eating. So, it seems, they really can't help us much there...yet.

However, since the waiting list for their Day and Inpatient programs is currently between 6-10 months, it is actually best that we went ahead with our evaluation now. Our hope is that by the time our name comes up on the waiting list, Bennett will be the proper age and will be ready.

It was encouraging to hear, though, that Bennett merely needs to be able to eat one ounce and drink one ounce of food (as well as be the proper age) to begin the Day Program. This is encouraging because we are not far from having Bennett be able to do both. At this point, we just need to work with Bennett's current in-home therapists to help Bennett be able to accept more volume orally. Our hope is this can be done within 3-6 months.

So, if we stay on track with the progress we think he can make, we're looking at "moving" to Dallas for 5 weeks some time in the Spring. And ultimately, we are hoping Bennett will be weaned fully by his 2 year birthday. (Although, we will likely keep the g-tube in for quite some time as we know that it is beneficial for giving medications or feeding him when he is sick.)

At this point, Bennett's current in-home therapists are planning to speak with the Baylor Feeding Clinic to make sure they can provide a form of "Outpatient program" that we would get with the Baylor Feeding Clinic if we lived in Dallas. And then, we will keep in touch with the Baylor Feeding Clinic over the next few months to monitor Bennett's progress.

We are already so thrilled at the progress Bennett is making and expect good things in the future! We are so happy to feel like we can now see an endpoint to Bennett's feeding issues, which brings us much peace and hope.

Everybody Dance Now!

Don't underestimate the power of Bennett's mullet! He's got the early-90's dance moves to go with it! This boy can shake his buns! :)

We hear this music "go off" several times everyday as Bennett's new favorite thing is to dance to the music on the boys' spinner toy. (Breck video taped him from behind so he wouldn't know she was watching him.) As evidenced by big brother, Oliver, coordination runs in the Gamel family.

Comparing Pictures of The Brothers

Oliver smiling, almost 3 years

Oliver smiling, 12 months

Bennett smiling, 11 months

******

Oliver with his pacifier, 9 months

Bennett with his pacifier, 11 months

******

Oliver chewing on a toy, 12 months

Bennett chewing on a toy, 12 months

******

Oliver's glazed serious look, 12 months

Bennett's glazed serious look, 11 months

We feel like the boys favor each other but have very separate looks. What do you think?

Playing Trains with Oliver

Everyday, the boys "play trains"...which effectively means dumping out all of the train pieces on the living room floor and sometimes actually building a track.

Oliver really enjoys building the track and placing the trains in order.

Bennett compliments Oliver's efforts by playing with the unused pieces...which find themselves in his mouth.

Bennett really loves those yummy train pieces!

(His favorite, by far, is the yellow and black construction barrier.)

Update

Bennett visits our neighbors' dog while they are on vacation. It was his first time to really "see" a dog and he loved it! He really enjoyed seeing the dog move and make noises. He giggled in delight.

Bennett is just doing so well right now! Some of the things he does these days includes clapping, imitating sounds/words, dancing (we are still trying to catch this on video), destroying his brother's train track set-up, throwing balls and chewing on hard plastic objects. It's all perfectly normal twelve-month old behavior and we love watching him do it!

He is slowly moving from three naps per day down to two. He is beginning to understand what we are saying and begins to respond to our questions with a giggle (for yes) or a head-shake (for no).

He is loving the attention he's getting from his 6-sessions per week therapist and is showing huge strides during that time. He is beginning to cruise around the furniture and has decided he does, in fact, like yogurt and peanut butter. We are still giving him only teaspoons of it at a time to allow him to explore, but it's much better than the nothing-but-applesauce routine we had going on a month ago.

CF Clinic Visit

Today was Bennett's visit to his CF Clinic. It was a great visit because we had brought no concerns and we expected Bennett's weight to be on target! Bennett now weighs 20.5 pounds which puts him at 26 percentile! And as expected, Bennett's lungs sounded clear, his oxygen saturation rate was 100% and overall health was deemed good!

Bennett is being moved up on his volume of formula. He now needs 51 ounces of formula per day, up form 48 ounces. So, we will increase his daily volume as well as the amount of enzymes he needs.

Before we left his CF doctor appointment, the CF doctor asked us to return next month. Experts recommend that CF patients follow up with their doctor once a month until the age of 12 months. So, Breck was curious why she wanted us to return next month since Bennett is turning 1 year old in two weeks. When Breck reminded the doctor that Bennett was almost a year, Dr. Dambro's eyes grew big and she exclaimed, "Oh my gosh! Has it been one year already?" Breck grinned and replied, "Yes, I know!" It is really hard to believe we've had a relationship with the CF clinic for so long - and hard to believe Bennett is already hitting his one year birthday milestone.

After a good surprise and realization that Bennett is, in fact, almost a year old, Dr. Dambro said she felt it would be good to continue to monitor him closely through the winter after which point we will begin to see her on a quarterly basis. We felt this was a wise idea and look forward to Bennett thriving.