30 September 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!!

16 September 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.

05 September 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 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!!