Tuesday, September 30, 2014

Happy 5th Birthday, Bennett!!

Today, Bennett turned five years old!!  
September 30, 2014

Bennett, you've come a long way baby:
September 30, 2009

Happy Birthday, our sweet boy!  You are full of energy and keep us regularly entertained.  You take nothing too seriously and find the best in everything.  You rarely, if ever, complain about doing your treatments or taking your medicine!  You are very brave.  You are compliant and helpful, tender and kind.  You're also very smart.  Bennett, you are a delightful little boy whom your father and I are proud to call our son.   While it's hard, at times, to watch you go through what you do, you remind us that life is short and to enjoy every minute of it!  Happy 5th birthday, Bennett!!

Tuesday, September 16, 2014

"What if it won't go back in??"

Brian and I sleep with two baby monitors by my bed.  But apparently that is not enough.

One baby monitor is for our actual baby, who rarely wakes up in the night anymore.  The other baby monitor is for the boys' room, for when Bennett cries for us to take him off his feeding pump at night, which happens regularly.

I hadn't expected to be awoken by Bennett's cries in the middle of the night as we had not placed him on his pump tonight.  Nonetheless, by the time I finally awoke to hear his screaming, he was hysterical.

I stumbled out of bed and found Bennett in his bathroom, sitting on the potty.  Tears were streaming down his face as he yelled helplessly for me or Brian to come to help him.

I rubbed my eyes to wake them up and get a clearer picture of what was wrong with him.  He sat on the potty, clearly going "number two".  I thought he just needed to be wiped so I grabbed some toilet paper in my hand and asked him to to calm down:

"I'm here, it's ok.  Shhh...don't wake up your sister," I kept saying.

But through his cries, he kept saying, "it won't go back in!! it won't go back in!!"

That's when I realized we were dealing with rectal prolapse again.

In my heart, I wondered if the amount of rest I had just gotten would be all I would have before another ER visit.  I quickly recalled the numerous hospitalizations that we've had when the rectal prolapse would not go back in.  Within a spit second, I thought to myself - is it time for us to have surgery again??

But, to calm myself inside, I also reminded myself of all the more recent times when the rectal prolapse has gone back inside - and I remembered the pediatric surgeon's reassurance that rectal prolapse is livable, as long as it will go back inside.

"It's ok, Bennett, it *will* go back in," I reassured him.  "Just calm down.  I believe you can do it.  It will.  Just calm down and allow your muscles to relax."

I have realized that Bennett's rectal prolapse is dependent on his pushing.  I knew that if I could get him calm, his own muscles would allow his rectum to return to it's original place inside his body.

Poor little guy.  I know it's terrifying for him.

After wiping his tears, he calm down.  He said, "it won't go back in."
I assured him, "finish going to the bathroom.  It will, when you're done."
Bennett said, "but what if it doesn't???"

:::Enter Oliver's therapy:::

Oliver goes weekly to a play therapist who is working with him, most recently, on anger.  One of the things the therapist recently told Brian and me is how Oliver's natural curiosity and fascination of tornadoes, volcanoes, earthquakes and meteors may also his way of communicating his intense fear of the unknown.

The therapist believes, and we think rightly so, that while Oliver feels safe in his life most of the time, he also believes deep down that there is something out there that cannot be accounted for and that "something", that danger, might strike at any moment.  (Sounds just like Cystic Fibrosis, doesn't it?)

The therapist thinks Oliver feels very unsafe so he gave us some very specific advice on how to help him learn to feel more safe.  The therapist said that when Oliver asks, out of fear, questions about tornadoes, volcanoes, earthquakes, etc., we should not go into long-winded answers about the realities of these natural disasters. Instead, we should see him asking about his deeper fears and so therefore, we should reassure him by telling him that he doesn't have to worry.

We are to say, "that's mommy and daddy's job to worry about that, not yours."  The goal is to let him know that somebody out there is worrying about it.  But it doesn't have to be him.


In that moment, I recalled Oliver's therapists' words of advice...let him know somebody is worrying about it.  But it doesn't have to be him.

Bennett asked again, "what if my rectal prolapse doesn't go back in???"
I looked in his eyes and replied, 

"If it doesn't, that's mommy job to worry about.  
I will figure it out."

That's all he needed.  He just needed to know he didn't need to carry it anymore.

Soon after, he allowed me to wipe him.  And, as I had predicted, once relaxed, his rectal prolapse went right back in.  We were both delighted.

When we were done, Bennett proudly said, "my dog watched it go back in."

I smiled and thought he must be talking about any imaginary friend dog.  We pulled his pajamas back up, flushed the toilet and washed our hands.

As Bennett said "goodnight" and turned to leave the bathroom to go back to bed, he reached out his hand and grabbed a little stuffed dog, who had apparently been sitting on the bathroom counter the entire time. Bennett must have brought the pup with him when he crawled out of bed in the middle of the night to go to the bathroom.

I guess the dog really did "watch it go back in," I thought.

As I cleaned up the bathroom and headed to crawl into my own bed, I thanked God for a hospital-less night...for rectal prolapse that eventually did cooperate...for Oliver's therapist who taught me how to calm an intensely fearful child...for words that did end up being the right ones to say...and for the stuffed dog that sat on the bathroom counter during that entire rectal prolapse episode, just waiting to return back into the sweet arms of his 4 year old companion who is now fast asleep.

Friday, September 5, 2014

Everybody needs a little Ryan Seacrest in their life...

A while back, on the day when Bennett was given a CT Scan at Children's Medical Center and when we were walking around the hospital to become familiar with it, we happened upon the Ryan Seacrest Studios.  Brian and I brought the boys in to watch the live broadcast and to let the boys see how "radio" works.  Before we knew it, the boys were on air themselves! :)  They loved it!

Ryan Seacrest has used his Ryan Seacrest Foundation to set up "Ryan Seacrest Studios" at 7 different children's hospitals around the nation, including Children's in Dallas.  Ryan Seacrest Studios broadcasts throughout the hospital but most importantly into the children's hospital rooms where sick children confined to their hospital beds can watch and listen through their hospital TVs.  

If children feel well enough, they are invited to come join the Ryan Seacrest Studios team downstairs in the studio.  If they don't feel well enough, they can phone in song requests, play games through their room telephone and even win prizes that are delivered to their hospital rooms.

We didn't know exactly what we were getting in to when we sat down and the boys were invited to talk to the Ryan Seacrest Studios team using the big microphones.  But, the kids loved it.  The staff at Ryan Seacrest Studios explained to us that the children love to watch other children broadcasted on TV.

There were breaks like in all broadcasting.  The boys were given explanations of how the computers worked and what the broadcast team was doing any any given moment.

The boys had a chance to learn how TV and radio is broadcasted.  They also just got some personal attention from the staff, which they loved.

I had a chance to ask how often Ryan Seacrest comes to the studio.  The answer is that he hardly ever does (probably because he's an incredibly busy guy) but he does apparently send his celebrity friends from time to time to come visit the studios and spend time with children at the hospital.

After the boys were interviewed via the microphones, they were invited to play with the studio green screen.  The staff (made up of some paid staff and some volunteer staff) gave them the boys fun pretend backgrounds and let the kids just dance and play with it.  It was a lot of fun for them.    They loved pretending they had light sabers and loved pretending to battle.  The staff gave me a copy of their on-air play as a memento of our time there.

After spending almost an hour in the studio, we decided it was time to go.  But, even though we came to the hospital for a CT scan/MRI of Bennett's lungs, what we received from the hospital that day was so much more!  I am thankful for those who volunteer their time and resources to give sick children other things to think about than hospital tests!!    

Thursday, August 21, 2014

Raising funds for another orphan disease

Our family has watched the amazing awareness and donations being made of and for the awful terminal disease, ALS (Amyotrophic lateral sclerosis), and have been very excited for the ALS community.

While Brian and I do not know anyone personally who suffers from the disease, we do personally know how big it feels when someone does something so little, whether they know what ALS is or whether they even care.  ALS is now a more widely known disease due to all the publicity.  The ALS Association has received more money in donations than ever before.

While our hearts yearn to see this kind of awareness and care for Cystic Fibrosis one day as well, we are thankful that others who share a similar grief are benefiting - in hopes that one day, they, too, will have a cure in hand.

In many ways, Cystic Fibrosis and ALS are nothing alike.  But, in some ways, they are very similar.  I thought I'd share a few things about ALS that feel similar to our own struggle with CF.

* Both ALS and CF are considered "orphan diseases" and have historically received very little attention or research by pharmaceutical companies.
* Both ALS and CF have about the same number of people affected in the US: 30,000 each.
* Both ALS and CF, in late-stages of the disease, end with respiratory failure and death.
* Both ALS and CF are progressive and have currently have no cure.

Yesterday, Oliver was challenged by a little girl in his first grade class to participate in the #icebucketchallengeforALS.  I spoke with Oliver about the disease so he understood why he was being asked to pour cold water on his head.

I explained that ALS, like CF, has no cure and causes the body's muscles to slowly stop working.  I said, "people who have ALS eventually lose their ability to walk...to move their hands...to talk or eat...even breath."

I stopped there and hadn't planned to go on.

But Oliver filled in the rest: "...and maybe they will die."

I said, "yes, they often do."

I explained that in the same way that our family tries to raise money for a cure and tremendously appreciates when people who care about us gives money for CF, we want to do that for others who need a cure.

Today our family donated money to the ALS Association and hope our fellow "orphan disease community" will soon see their cure.

CF is nothing like ALS and, yet, our grief and desperation for a cure, is.

Sunday, August 17, 2014

One thing about CF I forgot to mention...

"Hi Breck, we have a problem with Bennett" was how the conversation started out.

I've heard these words twice before from a teacher - once when the teacher had to call me when Bennett's g-tube was accidentally pulled out by another student in preschool and once when the principal had to call me over concerns Bennett had something protruding from his bottom.  Turns out, this time, it was regarding the second.

Although I thought that I had explained everything Bennett's new Pre-K teacher might need to know with regard to Bennett's CF care in the classroom - enzyme dosing, his need to stay away from coughs and colds, his tendency to be overheated - I completely forgot to mention possibly the most distressing thing for anybody caring for Bennett: what to do when his rectal prolapse comes back.

This is Bennett's teacher, Ms. Borg.

On Friday, while Bennett was on the potty at school, his rectum protruded from his bottom (this is what is referred to as rectal prolapse, a symptom of cystic fibrosis).  Bennett's rectal prolapse has been a problem that has been long addressed by his pediatric surgeons.  We have had several hospitalizations and a surgery due to this issue.  In fact, just a few months ago, I brought Bennett in to  make sure everything was still ok with it.

While Bennett is continuing to have minor issues with his rectum protruding regularly (although, not often), the surgeon explained she did not see a need for it to be treated, as long as it is returning to its normal place inside within a reasonable amount of time (about 30 minutes).

At the end of the 2nd day of school, I received a call from Ms. Borg, Bennett's teacher.  She seemed concerned about what was happening.  I tried to evaluate whether or not I needed to come up to the school to get him or whether it was just "Bennett's normal."  I ended up realizing it was ok so I reassured Ms. Borg that once Bennett was no longer trying to strain on the potty, his rectal prolapse should resolve itself on its own but that, if not, she could always just "push it back in."  (I can't imagine what that might have felt like to have heard on the other side of the phone - ha!)

A few minutes later, I received a call from the school principal who had heard about Bennett's rectal prolapse and had wanted to just check in with me.  Dr. Blake has been the boy's school principal since we started St. Paul's and I have a great respect for him.  He is incredibly supportive of our efforts to care for Bennett.

Dr. Blake and Bennett, Summer 2014
While on the phone with Dr. Blake, he said something to me that will always stay with me.  I was apologizing for the challenges that Bennett brings to the classroom when Dr. Blake said, "Parents often think their child's needs are bigger than others.  But each child has their own needs.  These just happen to be Bennett's needs.  We are committed to Bennett and meeting his challenges.  We will do whatever we can for him.  We just need you to teach us."

As a mother of a special needs child, it was like water to my soul to hear such kind words.  I knew Dr. Blake wasn't saying that to be "nice."  He was saying it because he meant it.  And I know it to be true because it's evident that Bennett's school is made up of an amazing group of caring people who *are*, in fact, committed to him.  What happened next was just further confirmation this was true.

While I was on the phone with Dr. Blake, Ms. Nolan, Bennett's teacher from last year, apparently found out Bennett was dealing with rectal prolapse so, most comfortable with his needs as she was his teacher last year, she confidently walked to the classroom next door and volunteered to do what Bennett needed - to just "put it back in" for him.

Ms. Nolan and Bennett, 2013
It makes my Mama heart incredibly thankful to know that Bennett doesn't just have one teacher who loves him and knows how to care for him, but multiple teachers who do.  

I consider our family incredibly blessed to have an army of supporters at Bennett's school: teachers who care about him as a whole person, families who help raise money for the Cystic Fibrosis Foundation so we can get him a cure and a principal who means it when he says St. Paul's is committed to Bennett.

Thank you Ms. Borg, Ms. Nolan and Dr. Blake for being brave on Friday dealing with Bennett's rectal prolapse issues and being willing to continue to help him whatever tomorrow brings!!

Thursday, August 14, 2014

First Day of School 2014

Today was the first day of school for our family!  All three are going to school this year!  

It's hard to believe our little Oliver is now in first grade.  He now has to wear a belt to school and tuck in his shirt like the big kids. :) Bennett started Pre-K this year.  He has grown up so much this summer.  He has become very independent and has grown significantly!  Avonlea will be going to school two days a week.  She's very social and we think will really love playing with friends!   I'm excited for new adventures this year!

First Day of School 2014

Oliver, First Day of First Grade, 6 years old

 Bennett, First Day of Pre-K, 4 years old

Avonlea, First Day of Early Toddler Class, 1 year old

Wednesday, August 6, 2014

Avonlea's Ice Cream Birthday Party

Last week, we held a small birthday party to celebrate Avonlea's first birthday.  This was my first girlie birthday party so I may or may not have overdone the pink.  :)  Planning Avonlea's birthday party reminded me that it wasn't that long ago that we were celebrating Bennett's first birthday.

It's hard to believe that it was one year ago that we brought our tiny baby girl home from the hospital. At 12 months old, Avonlea now walks and can sign several words in sign language (mainly "all done" and "bye bye").  We are pretty sure Avonlea says a few words too, but we're still trying to decipher how much of her talking is gibberish and actual speaking. :)

We chose an "ice cream" theme for Avonlea's first birthday because she ice cream is her favorite food of all.  She's a quiet baby until you stop giving her her ice cream and then she can get loud! :)  Cookies made by our friend Paola at Paola's Cakes and Desserts.

I made these cute little ice cream cone cookies from an idea I found from here: http://rosebakes.com/nutter-butter-ice-cream-cone-cookie-treats-recipe-tutorial/


We were really blessed with a beautiful day for Avonlea's party.  Typically, August summers, even in the evening are too hot to be outside.  But the night of her party, it was cool and windy enough to enjoy being outside, especially with ice cream in hand. :)

Happy birthday, Babycakes!  Mama and Daddy love you to pieces!!...

...your sweet big brothers do too!