30 April 2011

Amish Prayers

I received a wonderful small book in the mail a few weeks ago.  I was extremely excited to crack open this little book because I knew it held within it words of my heart that I have yet to speak but long to say.  The book is called, "Amish Prayers" and is complied by Christian writer, Beverly Lewis.

Ever since I was in Junior High and had the opportunity to go on a family trip to Amish country Pennsylvania, I have been fascinated by the Amish.  I love their simplistic lifestyle and desire to live a life that honors God in everything they do.

In fact, I read this one story about the Amish years before Bennett was born but I have remembered it many years later.  My favorite quote from the article: "As a Mennonite, Katie Martin embraces the teaching of her church, that sick children are gift from God, born to foster compassion and understanding."

This book of Amish Prayers is actually compiled prayers translated from the Amish's original German prayer book, Die Ernsthafte Christenpflicht.  The prayers are words used by the Amish both in personal devotions and collectively as a community.

There is one prayer that recently caught my attention.  It is a prayer for comfort.  I have had two terribly sad situations happen around me.  One situation is the sudden loss of a young man, a son of my Aunt and Uncle's best friends.  The second situation is the diagnosis of a devastating progressive disease of a friend of mine.  My heart has been in mourning for both of these situations, particularly for the people these situations most directly affect.  In both situations, I have pulled out my "Amish Prayers" book to guide me in my prayers for them.

Here is the prayer that has most recently been my own, on behalf of my family and friend:
"O Lord, like your servant David, the fear in my heart is great.  He, too called on you in great need, when his heart quaked and never expected to be happy again.  Look at me, dear Father, and see that it is the same with me.  I sometimes think that there is no hope left to summon.  Oh, how often do I think of these words: Misery has surrounded me, wretchedness has done me in.  I am dismayed that it is so, dear Father, but I know that you understand more than I can tell you, and therefore, I beg you even more, have pity on me.  Comfort me, O Lord!  Amen.

Peace I leave with you, my peace I give unto you: Not as the world giveth, give I unto you.  Let not your heart be troubled, neither let it be afraid.  John 14:27

I hope that this book of prayers will be a sort of "Common Book of Prayer" in my own life and that I will continue to use its prayers during those moments when I am grieving, thankful, anxious or peaceful. I love having prayers at my fingertips to read in situations where I find my own words seem to fall sort.

Here's my personal favorite right now, thanking God for a new day:
"O Lord, Almighty God and Heavily Father, you did not give us life and set us in this world merely so we would nourish ourselves with grief and work until we return to the dust from where we came.  Instead, you ordained our lives so that we should fear you and love you, and cleave to you with all our hearts.  Even as your divine grace gave us the day to work, so you gave us the night to rest.  Under your fatherly shield of protection, we have mercifully enjoyed this rest, and for that we humbly praise and bless you with deep gratitude.  Amen."

I'd be Amish if I had any ability could go without the internet, live on a farm and wear no make-up for the rest of my life.  But until then, I'm happy to be praying like one.

Here is my review of the book, "Amish Prayers":  A complimentary copy of this book was given by Bethany House for an honest review. 

29 April 2011

Feeding Clinic Pre-Admission Meeting

:::Edit: Oliver did so well on his first day of "school" (Mom's Day Out) yesterday.  He loved it, especially being with his new friends.  Bennett and I enjoyed our day as well.  In fact, my husband noticed a marked improvement in my cheerfulness when he walked in the door from being at school all day.  And our friend who called this evening noticed such a difference in my attitude that he actually wondered if I had been drinking! Ha!  Guess I really did need an opportunity to recharge.:::

Yesterday morning, I had an important phone call with the Baylor Feeding Clinic.  It was our Pre-Admission Meeting in preparation for our admission in a few weeks and it was hugely helpful.

I was able to learn more about the program and find out what our time there will likely look like.

First and foremost, I learned that the Feeding Program lasts 30 days.  (Four weeks!  Who-hoo!  I can do this!!  The lady said it can last longer but is not likely.)  The first two weeks of the program will be spent developing and implementing a plan.  The second two weeks of the program will be spent training me and Brian on how to feed Bennett effectively.

The Feeding Clinic's goal is to get Bennett off the feeding tube as quickly as possible.  The psychologist said most children who leave the clinic are able to be weaned about 70% of the volume of formula they came in on.  If we can get to that for Bennett, he'd be taking all of his calories by mouth except for about 9 ounces of formula (or one out of 6 of his daily feeds).

The Child Psychologist that I spoke with made a really good point considering Bennett's unique needs - his high caloric needs and yet lack of desire for food.  She mentioned that CF kids present a challenge because they are not motivated internally to eat.  But, she said in her experience, they do respond well to the program since it focuses on motivating the child to eat externally.

At this point, unless there is a feeding issue we don't yet know about (such as difficulty chewing or swallowing), our goal will be to increase the volume of what Bennett is eating.  The Child Psychologist said to do so, we will likely begin working with him on soft foods, food that do not require him to get tired or fatigued while eating.  Soft foods are efficient foods, foods easy to eat and swallow.  She said it may seem like we are working backwards when we work with soft foods but the hope is to get his volume up with soft foods and then begin to reintroduce chewing foods.  She even mentioned the potential of blending pasta so that he is required to eat two bites of blended pasta (a soft food) to every one bite of noodle (a chewing food).  

Apparently, the Speech Therapist at the Clinic will determine everything about the way Bennett eats: which food are introduced, how much, when and how.  Bennett will likely have Speech and Occupational Therapy daily.

The Feeding Clinic Child Psychologist did alot of "warning" me.  She warned me that this process is hard.  She warned me Bennett will likely protest, even as laid back as he might be.  She said parents often see a side of their children they've never seen when their children's eating habits are challenged.  She explained he will protest at first.  But, she said, she finds children will often fight ten times harder when they're parents are following the Clinic's feeding protocol.  And she warned the worst part is when the children are forced or participate once they return home.  

The Child Psychologist said Bennett will be taught through this behavior modification process that he has control on whether or not he eats but he does not have control over the plan, what he eats and how.

As far as follow-up goes, the Child Psychologist said we will have to go home and continue the behavior modification plan just as if we were in the hospital.  This is time intensive and can be stressful.  It means sitting with Bennett for 25 minutes sand focusing on nothing but his eating.  It means potentially listening to him scream for 25 minutes because he doesn't want to eat.  It means doing this for at least 6 months until he has fully taken to the program and begins eating appropriately on his own.

Overall, this process of getting him to eat can take a year or more.  If he has skill he must learn (such as how to swallow correctly or how to chew his food efficiently), we may have to return at some point for the Baylor Feeding Clinic's day program (a shorter, less intense version of the in-patient program).  But, already Bennett is showing he may thrive in the program.  Already, Bennett can put in his mouth and swallow foods that most children who go to the Baylor Feeding Clinic cannot (such as bites of pizza or steak).

My prayer is that God would already prepare Bennett for what is to come and help him catch on to the behavior modification process quickly.  We are hopeful and encouraged that this is a good step for him and that he will thrive.  We are getting ready for the hard work to come, in hopes it will all be worth it!

28 April 2011

Mom's Day Out

Brian and I recent met with Oliver's Play Therapist to find out more ways we can continue to help him work through his anxiety.  One of the things the therapist mentioned, which surprised me, was for me to get more breaks throughout the week.   She had many other suggestions of things we should implement but this one, she said, is very important considering my own feeling of being overwhelmed by both the boys needs.  Bennett's needs are physical: medication, treatment and food on time and repeatedly throughout the day.  Oliver's needs are emotional: needs for reassurance, patience and particular care when dealing with him.

So, today was Oliver's first day of Mom's Day Out.  I have hesitated to put him in a Mom's Day Out program for a variety of reasons but most importantly because of our need to keep Bennett well.  The healthier we can keep Bennett, the easier our lives are.  But now that it's Spring (the cold and flu season has passed), it seems like now is as good of time as ever.

I was concerned at first about Oliver's ability to handle a 5-hour program away from Mom.  But the therapist reassured me she would help us should he not be able to handle it.  He's physically old enough but emotionally fragile, she said.  So, we are working with him to become secure and confident within himself to be able to handle chaotic situations like a Mom's Day Out program.

Brian and I really hyped up his "going to school" earlier this week.  We talked about all the fun he will have.  We happen to know the teacher of the class as well as another child in the class, so this was very helpful for him.  We teased him by saying, "You're not big enough for school, are you?  That's what big kids do!"  And he would laugh and say, "Yes I am!"  (Reverse psychology seems to work well for preschoolers.)

He was very proud with his nap mat and Lunchable this morning.  He went into his class without any problems (bringing his stuffed toy Fox along).  He had asked if he was going to get to ride a bus since he was going to school.  But I assured him that he could in the future but at this point his momma was still gonna drive him around, since he's still in a carseat.

Bennett was distraught when I took the boys into the church program.  He thought I was leaving him and he wanted none of it.  But the reality is, I'm considering allowing him to spend a few hours there as well.  Our clinic seems to think it's a good time of the year and he will be fine.  I'm still alittle hesitant.  When Bennett gets sick, our world comes to a halt.

But, if Oliver does well and continues to enjoy going, I might just allow Bennett to go once a week as well.  One day a week to take care of the things I need to do might just help me better balance both boys needs and my own needs, as well.

If I've learned anything recently, it is how important Momma's needs are in relation to the family.  As the saying goes, "If Momma ain't happy, ain't nobody happy."  And I am aware of my own great need for stress relief, especially in relation to the Baylor Feeding Clinic admission soon.

27 April 2011

No More Vanco

Bennett is still doing fabulous.  We just finished our last month of being on Vancomycin, his antibiotic to cure his C.Diff.  Bennett has been on Vanco for four months.  But his GI doctor seems to feel confident that he should not have another occurrence of C.Diff.  I'm very hopeful!  (But I know we've been here and back again before.)

Nonetheless. Bennett has just thrived since we've been able to overcome this chronic infection.  Bennett, having been so sick for so long, makes moments like this so very special:

Our little funny man plays a game.  We *love* seeing giggles and silliness from Bennett.

"Here I am!"  A healthy boy is such a pleasant sight!  

The storms have gone away but we had an exciting night last night. For the first time since we've been in Texas, we heard the tornado sirens go off at 9pm. We woke both boys up and took them into the bathroom. I had to really be careful not to get too excited myself. I've learned from Oliver's play therapy that he is incredibly attuned to my emotions. And I knew that a child who struggles with anxiety and is attuned to his mother does not need an anxious mother. So, I tried to keep calm.

At one point, I asked Brian if he and Bennett (who were sitting on the toilet seat) should join Oliver and myself in the bathtub, in preparation of a potential tornado. Brian's response was, "when we hear the sound of a train coming, we'll get in." (He's from Tornado-Alley, Missouri so he's not too worried about tornadoes.) Anyway, a few minutes later, Oliver was in the bathtub talking about how the tornado was gonna sound like a police car and an ambulance. Ha!

Randomly, I changed the background to the blog.  I was finding too many error messages with the current background.  Maybe sometime soon I'll get a whole new blog background.  But that means I'd have to convince myself it's worth spending real money on something's something I've yet to be able to convince myself of...but hope to in the near future. :)

26 April 2011

Dying Easter Eggs

 This was Bennett's first year to really enjoy dying Easter eggs.   It was a big hit with the boys...

 ...well, once the TV was turned off.  Clearly, dying eggs had a bit of competition at first.

 Brian (who found his Hawaiian spirit this Easter weekend) teaches Oliver how to use a white crayon on the eggs before dying.

 Bennett really enjoyed Daddy letting him "help."

 He was very interested to see what happened to the egg.

This is where I am behind the camera saying, "don't touch!"

I loved watching the boys pay so close attention to the eggs.

Oliver tries dipping eggs on his own.

After a few minutes, Daddy reveals the egg's new color.

Oliver and Daddy.  I may or may not have bribed Oliver for a smile. :)

Bennett dyes his egg blue.

Sooo interesting to an 18 month old!

Ooooh! Wow!

Daddy reveals Mommy's egg.

Oliver, becoming quite confident with dying eggs, did so good on his own.

Daddy makes Oliver laugh.

One of the funniest things Oliver did while observing eggs was exclaiming, "it's hatching!  it's hatching!"  Poor thing guy has seen "Milo and Otis" one too many times.  He kept thinking a baby chick was about to pop out of our poor little eggs at any time.

Roosevelt Oliver.

Oliver had so much fun!  He has become such an independent big boy!

Bennett had a great time too.  Although, watching eggs dry wasn't as engaging as he the idea of swining in the backyard.

Our beautiful eggs.

Happy Easter!

25 April 2011

Easter Egg Hunt

What a wonderful Easter weekend we had!  The weather was beautiful.  Everyone was healthy.  And family came to visit!  This was the perfect storm of a peaceful weekend break!

We had planned to attend our church's children's Easter Egg hunt on Saturday morning.  But, unfortunately, the end of the week hit us hard.  Brian, specifically, has been so exhausted from his course work over the last two weeks that I couldn't bear ask him to sacrifice another Saturday morning to get up early, even for such a fun occasion.  My Easter gift to him was to sleep in.

So, we chose to let the boys have their own backyard Easter egg hunt.  Thankfully, Pops, Mumsy and Aunt Brooklyn offered to hide the eggs!

We were all surprised at how quickly Bennett got into the game of finding eggs.  He knew almost immediately what he was supposed to do.

And he was darn good at finding eggs, too!

Oliver really enjoyed egg-finding as well!  He was a champ!

Oliver dashed and darted throughout the yard to find the eggs.  He was very sweet to Bennett, allowing Bennett to find all the ones he could.

Bennett needed some guidance from Pops.

But ended up finding several eggs they had hidden for Oliver.

It was pretty adorable to see Bennett carry around his own basket.  He did well until one point when the basket got a bit heavy.

I love this picture.  Bennett's little legs are just a running.

Get it...

Got it.

Bennett watches Oliver loop pass him to find more.

Oliver is a very serious egg-hunter.  This is because he knows one thing...




Oh, the treats!

Once done, Oliver literally went through each egg, one by one, shaking them to hear what's inside.

Daddy had hidden one little M&M in every three eggs.

Oliver was pretty funny.  He would shake the egg and then toss it.  But if he felt candy inside, he was on it like white on rice!

Pops explains to Bennett that there are treats in his eggs too.

Bennett doesn't really talk yet but this face says it all:  "Uh?!  I can't open.  Help me!"

Mumsy offers Bennett his treats.

Bennett finds fishy crackers in some of his eggs...

and M&M's in his too.