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Archive for June 2011

Exit Perfection.

Thursday, June 30, 2011

I am not and will not never be the perfect mom. 

I know.  It's hard to believe.  I, too, have been in denial about this until now.

Despite my very greatest efforts, I am not going to be wonder mom - the perfect mom I have dreamed I would be.

Once I dreamed of my non-TV watching babes playing with nothing more than wholesome natural wooden learning toys.  I dreamed of my eldest soaking up a love of books while sitting with the family after a wonderfully peaceful evening meal together.  I dreamed of homeschooling my children under the nurture of their mother-teacher's guidance, a decision to protect my chicks as long as possible from the cynical and corrupt outside world. 

But, these days, I'm over that. 

Exit Perfection.

Enter My Best.

Since having a child with special needs, I've learned that what it means that to be a good mom is to stop trying to be a perfect one.

My life's circumstances are getting in the way of my efforts to obtain perfection.  I simply don't have as much time, or as many resources or as much energy to focus on being perfect.  These days, my time, resources and energy are being spent worrying about more basic things such as keeping one son physically healthy, one son emotionally healthy and our marriage strong.

With special needs to consider, I have lost some of the control that I have spent years working to gain, through conversations and books and dreaming of all ways I can be the perfect mom. 

What once were worries like, "what school will my children go to?" and "will my kid grow up to be successful?" are now distant memories.  Now, I am more concerned about "did I reorder Bennett's acid reflux medication" and "is Oliver's meltdown because of overstimulation or a need for my attention?"

I've landed in Holland, remember?  So, my dreams are a bit different now.  No longer am I pining to be the "perfect" mom.  I want merely to be the best mom, I can be... 
...given the circumstances. 
...given my children's needs. 
...given my ability.

Life has changed on me.  No matter how much I thought about this, prayed about this, read books about this or pondered what I wanted parenthood to be like, I realize now that I am simply not in control.

These days, instead of sheltering my children from TV (as I've always tried to do), I gladly sit my 1 year old in front of the TV in hopes it will entice him to complete his twice daily chest therapy treatments and four-a-day feedings.

Now, instead of choosing to buy only those open-ended wooden toys, I'm buying up like pancakes, the brightly colored annoying plastic toys - anything to entice my youngest to "take his bites."


 
Now, instead of reading Deceptively Delicious with ways to stealthfully engineer my child to eat his broccoli, I'm conjuring up inventive ways to get my CF kid to down tubs of Haagen Dazs ice cream and bags of Cheetos.

My previous dreams of perfection were not necessarily wrong.  Perfection is good.  God is perfect and our desire for God is good.  But our desire to be prefect is not.  And it's not realistic, either.  For myself or anyone else. 

So, in a twist of fate - as though God knew this all along and might even find this worth chuckling over, I am reveling in all of the things I once judged "less than perfect."  And I am willing to admit that perfect may not be all that perfect after all.

But, my kids don't need a perfect mom.  They just need their mom...
...the best one she can be.



Potty Dance

Oliver pooped in the potty three times in a row. This was his reward...

A family outing to Chuck E Cheese.  Glorious for a three year old!

FAQs Continued

Tuesday, June 28, 2011

As for an update, Bennett is doing really well.  He enjoyed avacado during Speech Therapy today so that will begin to show up on his menu now.  There have been a few meals that we have had to skip for a variety of reasons.  We try not to miss meals but there are times when we have no other choice due to time constraints.  We have been absolutely delighted that Bennett has eaten a ton of food during those times (2 ounces of food).  Whenever I feel this protocol is overwhelming and fruitless, all I need to do is let him eat on his own so I am reminded it's working!!  And that feels SO good!


Ok, here is a follow up to my earlier FAQ's about Bennett's eating protocol.  Hope this helps!!  It's been a great exercise for me to articulate the whats and whys of what we are doing with Bennett.  So, keep 'em coming.  (::EDIT::Olga, you're keeping me on my toes! :))


1) What happens if Bennett decides he's no longer bribeable? If he no longer cares that there's no TV or no toy, or the toy you have is not worth going against his own sense of self? I assume the program doesn't allow for a "if you don't eat, you don't eat" response?
Well, this happens.  There are times when the toys are boring.  There are times when the toys just aren't worth taking a bite.  This is why we have to keep thinking of new toys or new materials that might stimulate and motivate Bennett (in fact, went garage-saleing on Saturday to look for fun new toys).

But, then there are days when even the best toy won't work.  Sometimes, like when Bennett is tired, nothing is really going to work.  However, once a command is given (such as "take your bite"), a command must be follow throughed (just as is so in parenting).  So, if we say, "take your bite" and Bennett refuses to take his bite, he has two options.  He can change his mind, take his bite and get his toy.  Or, he can just wait out the time.  (The meal is always over after 25 minutes.)

The thing about this method is that everything is controlled for Bennett except whether or not he eats.  We will not ever force him.  So, the place, toy, food, amount, pattern and feeder has been predetermined.  Nothing he can do can change any of those things.  No amount of crying, kicking, screaming, spitting out food or refusing to eat will change these things.  The only thing Bennett has control over is whether or not he will eat.  Again, the goal of the control is to help Bennett be successful.  His only job is to eat.  So, if we refuses to eat, we honor that.  But we hope that by taking care of the other factors, we will entice him to eat.


2) When does the program envision him recognizing appetite (ie, when do they cut calories?)
I don't think the program envisions him to recognize appetite at all.  I think this is the whole premise.  Because a child like Bennett may never feel hungry, he is being taught so that whether he is hungry or not, he must eat.  The goal is to encourage his natural hunger cycle to appear.  But the success of the program does not depend on it.  Bennett cannot afford to wait upon his body to tell him when to eat.  He simply must eat, just as he simply must do his daily chest therapy treatments to stay well.  In respect to cutting calories, do not believe we will ever cut Bennett's calories.  We will wean from the tube when his oral intake has gone up enough to make that jump (usually when he's at the cusp of replacing the calories he's taking via tube).  But Bennett will always need to push the calories due to Cystic Fibrosis.

3) Why do they not allow a child to receive food when they show actual, self-motivated interest? What's the reasoning behind that one?  
There are some times when Bennett can have food when he wants.  For example, in the evenings, after he is done with all of his feeds, Bennett can have anything he wants to eat.  Tonight, he chose to eat chicken, pasta, broccoli and carrots from the meal.  I was very happy to see him eat up so well, especially after he just ate!  However, I was disappointed to watch how he "pocketed" the food under his tongue which meant he didn't eat and swallow correctly like he should.  (Even if he eats a ton of food, if he can't eat it correctly, it will do no good.  He is more likely to choke and gag, therefore, be turned off by food he is not eating correctly.)

The goal of the program is to keep Bennett from using this poor oral/motor skills too often since we know that the more he uses skills incorrectly, the more it will be difficult to correct later.  So, while I was happy he was eating, I was not happy he was eating incorrectly.  If these items had been presented in his meal, they would have been done so in a way that would help him use only his correct eating skills and would have allowed us to stop him from eating incorrectly, if it was necessary.  (For example, he sometimes wants to blow bubbles in his milk.  We must correct him by saying, "That is not a drink, Bennett.  Take your drink" in order to redirect his good behavior and not reward his poor eating skills.

I had to learn my own lesson of not letting Bennett eat between meals.  Like any mom who is desperate to have her child eat, I went against the hospital's protocol and fed Bennett tiny bites in between his meals after a few days at home.  I won't do it again.

Bennett fought me more during the day of those meals than during any other time.  Even the smallest amount of food can affect his hunger pattern, I am told.  But in addition to that, he was getting the message that he didn't need to eat during our "meal times" because he knew mom would give him whatever he wanted after the meal time.  So, it turns out, I was actually sabotaging his success.  I learned that if he came to the meals not hungry or with the belief that he was going to get to eat whatever he wanted later, he would fight me even harder than he would otherwise.  So, I made a decision after that day that I would not do that again.

Feeding Clinic=Finding My Best Friend Again

Monday, June 27, 2011

Before my first year in college, I was given a job at the Christian camp, Pine Cove, which I grew up going to as a teenager.  Since I hadn't finished my first year of college, I couldn't be a full fledged counselor.  But I was given the job of "Chaos Coordinator" (aka assistant counselor and kitchen duty).  It was my greatest surprise to find out when I got there that one other person had been given this same job.  A girl my same age named Ashley.  (Pine Cove has a fun tradition of giving all of their counselors nicknames.  These nicknames are what the children call their counselors throughout the week until the counselors' real name is revealed at the end of the week.  Ashley's nickname was "FoPa"- pronounced Faux Pas - and mine was "Sparkler."  It's funny that it took us both SO long to finally get used to calling each other by our given names.  I often refer to Ashley as "Ashley FoPa" because "FoPa" is all I called her when we first became friends.)


Long hours in the kitchen + running the camp store together (seen in this picture) + living in the same cabin + young adult angst + the need for a sweet friend during our 6 weeks there = a friendship that will last forever.  

...But believe it or not, until recently, we had not seen each other in more than 10 years!  


When I realized we were going to be at the Feeding Clinic in Dallas, which is not too far from where Ashley and her husband lived, I contacted Ashley to see if she wanted to hook up!  Thankfully, she did and she brought her wonderful husband and beautiful girls with her.

Brian and I truly enjoyed every minute of their company when they came and brought us dinner at the Clinic.  Brian later mentioned that they are the kind of friends whom you feel like you've always known and people who would do anything for us or anyone else.  I couldn't agree more.  Ashley and her husband Ben are in love with the Lord and this exudes through their hospitality, genuine interest in others and graciousness.  Not one thing has changed about Ashley.  This is who she was then.  And this is who she is now - except now she has a counterpart who is the same way!


Ashley's little girls are ADORABLE!  Rachel is on the left and Anna is on the right.  They are incredibly well behaved and would be wonderful daughter-in-laws! :) I'm just sayin'.


Ashley was so kind as to bring her scrapbook along with her to visit us.  I loved going back and seeing pictures from that time.  The memories flood back to a time when we were just trying to figure ourselves out.  I was going through a period of rebellion and Ashley was my "Jiminy Cricket."  This picture was taken next to the "Sign Language" sign at camp.  Ashley and I taught Sign Language to the elementary campers during "Activity" time each day.


Being goofy as we were back then, we decided to make a "redo picture".  I think it's hilarious that not only have we matured since our last picture together (in addition of having combined welcomed 4 children in the world), Ashley is now pregnant with #3 and my #2 is hanging on my leg (Bennett decided he wanted to "say cheese" for the picture too).  It's amazing what can happen in 10 years.  


This is a picture and experience neither of us will forget.  One of the benefits of working in the kitchen was the access to goodies the rest of the camp didn't have access to...such as leftover chocolate pies.  Man, this was good!  We'd sneak in when our camp boss wasn't around.  This picture is just an example of the mess the two of us got ourselves into that summer.  Good times!


Although our official title was "Chaos Coordinators", we called ourselves the "Kitchen Kuties."  We thought we were pretty cute.


Another redo picture: It's obvious that in ten years, my hair color has changed, my socks have grown 3 inches shorter but my love for my dear friend Ashley has not changed a bit.

Thank you for your friendship, Ashley!  It's wonderful to reconnect again and yet feel like we never even left each others' side.  We're in our own kitchens now, but we'll forever be Kitchen Kuties! :)


P.S. See what Ashley had to say about our time together on her family blog: http://catinglittlebits.blogspot.com/2011/06/reconnecting.html.

Oliver at the Feeding Clinic

Sunday, June 26, 2011

Here are some of my last posts about our time at the Feeding Clinic...

This is the day Jennifer, Oliver's favorite Child Life Specialist came to visit him and brought a friend with her (the puppet, I mean - the other sweet woman is another Child Life Specialist who was training).


Jennifer wanted to bring her puppet friend to allow Oliver to explore with medical things and ask questions.


This is the part where Jennifer shows Oliver about nasal feeding tubes (NJ tubes).


Bennett decided he wants to see what all the fuss was about, too.


Oliver listens to the puppet's heart.


Looking back at these pictures reminds me of how I felt during this time.  At first, I was so glad Oliver had this experience.  He needs more opportunities to understand all of the hospital/medical stuff going on around him.  But I remember that his behavior was not as behaved as these pictures tend to show.

In fact, within a few minutes of these pictures, Oliver began acting silly and seeming to not be interested at all in what Jennifer had brought to show him.  I could tell by the Child Life Specialists' faces that they weren't sure how to read Oliver.

I wanted so badly for Oliver to sit there and soak up the experience.  But instead, he acted unsure of himself, silly and a bit annoying.  Recalling what I had learned from Play Therapy, I tried to remind myself that this out of normal behavior was actually very normal.  I explained his weird behavior as anxiety, not misbehavior.

I could tell Oliver felt very uncomfortable with all of the medical supplies and a puppet.  Instead of soaking it up, he was shutting down emotionally.  And as it hit me what was going on with him, I vividly remember bursting into tears.  My heart broke for him in that moment.  Here was my little 3.5 year old who felt unsure and unsafe in an unfamiliar place, forced to be there because his little brother (not of his own will) demands so much medical attention.  My heart broke for Oliver.  This silly behavior was his only way of communicating to me, "Momma, I'm am scared and don't like any of this."  As a mother, it just felt so badly for him.

"How can I meet the needs of both of my sons?," I thought.  How can I give special attention and medical care to one son without causing the other son to be emotionally scarred by these experiences?"  I explained my thoughts and fears as I wiped my eyes and resigned that my heart was breaking for Oliver.

Jennifer, in her very confident Child Life Specialist way, reassured me they had no expectations for Oliver's behavior.  And then she reminded me that all children deal with these things in their own way.  Oliver's silly behavior was not wrong but rather his way of processing it all.  She reassured me that she had no expectations for Oliver's behavior and neither should I.

I chose to let go in that moment.  Oliver needed me to just accept his behavior and see it for nothing more than his way of coping.  I appreciated being reminded that grief does not have a "right" or "wrong" way to be experienced, even when you're three.  Maybe I was the one who learned more from the Child Life Staff and puppet, this time.

Occupational Therapy

Saturday, June 25, 2011

I still have several posts worth of pictures from our time at the Feeding Clinic.  So, I will post those in the next few days.  I am glad I was able to get some shots of Bennett in Occupational Therapy at the Feeding Clinic as his occupational therapy in Waco will be somewhat similar.


Bennett LOVED the swings.  Often, the swings were used as a motivator to get him to participate in occupational therapy exercises.  However, the swings were also very beneficial for working with him on balance.  When Bennett sits on his bottom, he often keeps his legs in a "W" formation, which allows him to better stabilize his trunk area.  However, it is not good for his posture.  The swings help him build core strength.

Megan helps Bennett play in the sensory box.  The sensory box encourages Bennett to touch textures he would otherwise prefer not to touch.  This box was filled with packing peanuts.  However, tiny little trinkets were hidden inside so he would try to touch it.


Ironically, on one of our first days at the hospital, I met Megan - whom I recognized almost immediately as one of my sorority sisters from the University of Missouri (crazy that we'd meet in Texas!).  When I graduated from college, I joined the Kappa Delta alumnae board where I got to know Megan who was undergraduate chapter officer in the sorority.  It was super fun to have her work with Bennett at the Feeding Clinic and see her running around the hospital from time to time.  She's a great woman and I was so glad to have gotten to see her again, no longer an undergrad but now in her career.

At the Baylor Feeding Clinic, I noticed the Occupational Therapists would often surround the child (patient) with their bodies.  I asked about this.  Apparently, this keeps the child feeling safe as well as focused on the task at hand.



Megan had Bennett lie on a rolled mat and reach for a toy.  This is to help his body in a variety of ways.  His trunk, arms and hands.


Using pull apart toys.  Bennett struggles with this task.


Megan shows Bennett how to pull them a part.  When he wants to stop the activity, Megan encourages him to try once more.  

FAQ's regarding Feeding Bennett

Friday, June 24, 2011

:::EDIT: Heather, I can feed Bennett avocados and actually have one in the fridge as I type to feed to him at some point. But I haven't really known how to feed it to him, (spoon, guac, etc?). So, I LOVE the idea of mixing it in yogurt!! Great idea!  I will plan to do that!  And thanks for your story, Nicole!:::


I so much appreciate the questions I've received on the blog.  It means alot that people care enough to read...and even more that they care enough to ask!  So, here are the answers to some of the questions I've received both online and in person...

1.) Isn't the short term goal to get Bennett to feel hungry and WANT to eat and then you'll be able to go from there to tweak what he eats and hopefully eventually be able to serve one meal to the family instead of having him eat something different?
Yes!  Our goal is to get Bennett to be hungry, want to eat and sit down and eat what we eat.  Through this regimented program, we are becoming the "regulatory" system for Bennett that his body does not seem to be able to be.  We are helping him get used to eating at certain times, teaching his body to crave nutrients that those times.  And we are helping him be confident with eating by giving him foods we know he can eat successfully.  Over time, with the help of Speech Therapy teaching him how to chew and swallow properly, we will introduce more foods - many of the foods we eat at our meals.  Bennett dictates what he wants to eat as much as possible.  However, we want to encourage him to try new foods, some he might not choose himself due to his sensory issues.  If we notice he doesn't like a food (such as tomato-based foods like Spaghetti-O's, we take it off his menu).  Due to his need for calories, some foods, such as apples, even if he loved them and ate them all day, cannot be on the menu for every meal as he would never eat enough apples to meet his daily calorie need.  So, our system right now is to teach his body a hunger cycle, teach him how to eat a variety of foods, increase his intake and help him enjoy the process of eating.  Over time, we will slow give him more and more control and allow him to eat naturally on his own.

2.) Is there any concern about the very high levels of sodium in the Kraft Mac and Cheese?
Believe it or not, no.  In fact, Bennett needs more sodium that he could ever get from his food.  We actually have to give Bennett an entire 1/2 tsp of salt per day (usually dumped in his nightly tube feed) to help him meet his daily sodium need.  This is because Cystic Fibrosis causes him to loose more salt than he body needs to lose.  In addition, CF keeps him from fully absorbing the important nutrients and salt most people can typically get from their daily diet.  While Bennett takes enzymes to help improve his absorption, we still have to give him vitamins ADEK and a 1/2 tsp of salt every day.  Besides needing more salt to stay well, Bennett also needs more fat, protein and calories than a child his age. So, Mac and Cheese - even a McDonald's Hamburger - are some of the best foods Bennett could be eating!  Seriously.  Doctor's orders. 

3.) Why doesn't Bennett eat?  Is it because of Cystic Fibrosis?
Bennett's feeding issues are due to complications of Cystic Fibrosis and made more difficult by Cystic Fibrosis.  For the first month of his life,  Bennett had tubes shoved down his throat, likely causing him to be orally defensive towards things in his mouth (causing sensory issues).  This slowed his natural infantile progress towards learning how to eat.  He may have also had a less than strong suck causing him to wear out too quickly when taking a bottle.  In addition, he had reflux issues and GI issues that likely made him resistant to wanting to eat.  These are all early complications of his Cystic Fibrosis.  Many children with CF who do not have early issues, such as Bennett did, do not show these sorts of oral/motor and sensory problems which can delay children's ability to suck or chew food.  CF is not directly the cause of his feeding issues but are certainly related.  CF complicates things even more because children with CF struggle with malabsorption and need 20-50% more calories than an average child their age.  This means when Bennett does eat, he can easily get tummy aches and diarrhea if his body does not absorb his food properly.  And, because he needs SO many calories, even if he ate by mouth, he would struggle to eat enough to keep growing strong.  Did CF cause Bennett's feeding issues?  Not necessarily.  But without CF, Bennett would likely have learned to eat and continued to eat like any other child.
4.) I don't know whether that means those kids needs to stretch their tummies more, like Bennett, so that they can take all the food that they need (in other words, they need to learn to "overeat" so that they stay healthy), or whether success is a partial wean, with additional calories supplemented via tube? 
  This is vital to keeping himself well.  Statics show that kids with CF who are in the 50% percentile and over are more likely to stay well and have bigger lung function.  At this point, Bennett still hovers the 25% percentile.  Eating may be a chore but it is something we want to teach him to do, whether he wants to or not.

5.) Four times a day is alot.  Can you make Bennett's eating times flexible?  What if you missed one?
Bennett's feeding times are as flexible as possible considering we must complete 4 feeds per day (in order for him to eat enough calories orally).  But since he has to eat every 2.5-3 hours, take a nap, get in two 40-minute vest treatments and get in the bed by 8pm, we're pretty much left with having to feed him at 8:30am, 11:30am, 3pm and 5:30pm.  We have been advised that we can miss a feeding here and there.  But the strength of the program is consistency.  (We pre-plan in advance to miss one meal a week so we can make it to Church.  We're hoping God will give us grace on that one. :))

6.) Can you do his feedings outside your home, like at a restaurant or friend's house? 
Yes, we can utilize the protocol in any situation in which we are willing to allow Bennett to scream at the top of his lungs should he not want to "take his bite".  So, needless to say, the best place to feed Bennett is at home.  The benefit of feeding him at home is that we have control over distractions that might keep him from wanting to eat. Bennett is wonderful at using the slightest distraction to keep him from eating.  And if he can't find a distraction, he likes to become one himself.  (Today, I got so tickled with him that it took about 3 minutes for him to take his bite.  I can't help that he can make me explode with a smile by merely giving me a look with his eyes.)

7.) How long do you have to do this feeding protocol? 
We are planning for the long haul.  We expect to do this for a year.  Hopefully less.  But it takes some families years before their children are able to fully eat on their own.  Every day.  Every week.  Every month.  Holidays and weekends included.  As Dr. Phil says, "you do it until."  We're willing to do this until he eats on his own.

An update on Oliver

Thursday, June 23, 2011

A few weeks ago, our Baylor Feeding Clinic Occupational Therapist (OT) recommended that we start two practices with Bennett before his feedings: joint compression and brushing.

While "brushing" Bennett one day, I realized that "brushing" would be excellent for Oliver, who seems to seek sensory input.  I knew he would love the feel and would appreciate the extra attention I could give him.  I asked the OT if I could use it on my other son.  She warned me not to do so without evaluating my other son first.  Apparently, it can do more harm than good on a child who doesn't need it. 

So, this afternoon, along with Bennett, I had Oliver evaluated for in-clinic Occupational Therapy services.

Oliver loves to run.
And run.
And run.
And run.
In circles around the living room,
down hallways,
on our driveway.

And often, he runs while making "car" noises. Sometimes, these "car" noises are so loud that I can't talk.  Recently, I have begun to be more aware that his "car" noises (growls, really) and running are something he feels compelled to do, not just something he likes to do.  Oliver will demonstrate this behavior to the point where any other child would be fatigued.

A few months ago, Brian and I mentioned to his play therapist that he seemed to be sensitive to sounds.  He hears sounds we don't often notice (like the humming of the light) and is overwhelmed by sounds that seem fairly common (like the hairdryer).  She wondered out loud if he had sensory processing issues.

As we spoke, we began to realize that Oliver actually craves sensory stimulation.  So, the Play Therapist recommended that we purchase a rocking horse or swing to help him.  She also recommended that we play with him physically and get him involved in physical activities.  Both which we did.

But, after thinking about it a long time and seeing the benefits of joint compression and brushing on Bennett, I decided to follow my gut and have Oliver evaluated for occupational therapy.

As soon as we walked into the small room at the in-clinic therapy office, Oliver went to running.  (He usually does this when he is anxious, which is easy to be in a small room at a new place you know of no reason why you are there).  While trying to speak with the Occupational Therapist throughout the evaluation process, I said, "I believe my boys both have sensory issues.  But for totally different reasons."

The therapist replied, "oh, I can absolutely tell.  One is sensory-seeking.  And the other is sensory-avoiding."

I wanted to bust out laughing.  She is SO right!  And I was absolutely unequivocally relieved to hear her say that.  Bennett struggles to put his hands in a variety of unfamiliar textures.  He wants nothing to do with new sensations.  Oliver, on the other hand, seeks out sensations all day.  It is what helps him find his calming place.

As we talked about Bennett, I outlined my understanding of his needs and how we would likely want to proceed forward with continuing the good work we had with the Occupational Therapists at the Baylor Feeding Clinic.

But, as we talked about Oliver, I asked more questions.  I yearn to better understand his needs.  The therapist, who by this time, had done some evaluative exercises with Oliver, seemed to greatly understand some of his issues and offered her insight into what she saw was the problem. 

Relieved to hear our concerns were validated, I finally asked, "well, if we had done nothing about this, what do you think would have happened?"  The therapist replied, "oh, you would have eventually done something by the age of 7...because his teacher would have told you he had the worst handwriting in class" (because of his delayed fine motor skills).  The therapist also mentioned that we might would have heard from teachers "he can't keep his hands to himself, he wants to touch everything" or "he can't seem to be quiet in school" (due to his need to seek sensory stimulation).

I wasn't surprised to hear about the sensory stuff.  But the handwriting stuff??  It turns out that what I perceived was a lack of interest in crafts and coloring may actually be a difficulty with fine motor skills.  At three and half years old, Oliver can only barely draw circles bute cannot draw a cross, boxes or pictures of any kind.  And he doesn't enjoy puzzles in the least.  Turns out he may just have such a hard time with them that they aren't fun and he doesn't ever want to try them.  I had no idea!

So, both boys qualified for therapy.  Thankfully, I can take them at the same time twice a week for 30 minute sessions. 

I am ecstatic that Oliver is going to get care in this area.  I want him to enjoy writing (clearly, I love it!).  And I want Brian and I to learn how to help him feel safe and secure through stimulation, getting it in any healthy way he can.

In addition to Occupational Therapy twice a week and Play Therapy once a week (which continues to be WONDERFUL for him), I am sending Oliver to Mom's Day out twice a week this summer.  This gets Oliver out of the house, into fun things and provides me more one-on-one undistracted time to feed Bennett. 

The introduction to "school" for Oliver was hard for me at first.  I have seriously considered home school up until recently.  But I believe it is best for Oliver not to be so tied down to the care of his brother.  The more he can do independently and outside the daily care routine of Bennett, the more, I believe, he will thrive. 

Sometimes, I wonder if his watching me care for Bennett day in and day out can actually cause him more anxiety.  So, I have found a "big brother" or "big sister" for him to take him out of the house regularly to do fun things I am simply unable to do with him as often as I would like.  As one of my friends mentioned, "everybody needs to be somebody's #1."  And I feel that it would be greatly beneficial for him to be somebody's #1 (outside of mom and dad).  It's easy for Bennett to be everybody's #1...he's the baby and he's sick so he needs lots of care.  So, it's harder for big brother to catch people's attention.  I hope this will help.

I was recently asked how I balance giving Oliver the attention he needs with all of the care responsibilities I have with Bennett.  I feel like I am unable to give him as much time as I would like, which is why I am delegating some of that time to dad and a "special buddy."  But more importantly, through Play Therapy, I am learning how to make the most of the time we have when I do have time.  I am learning how to be much more present with Oliver when I am with him (like staying off of the phone in his presence, trying not to multi-task when I'm with him, actually reading to him or playing with him on the floor, etc.). 

Through play therapy, I have learned how to better bond with Oliver and him with me.  So, this has made it easier for me to send him to Mom's Day Out, allow Daddy to take him or send with a babysitter for small amounts of time.  That way, Oliver knows that when we are with each other, Momma is present and paying attention.  On the flip side, when he is gone, I get very busy on other things so I can handle those things outside of his presence. 

Before I realized how important this was, I believed that as long as I was with Oliver, he would be fine.  Now, I realize that it isn't the quantity of time with Momma that is so important, it's the quality.

So, my parenting recipe for Oliver at this point is: quality time, time at "school", a "big brother/big sister" and proper care from experts keeping a watch for ways to meet his needs (Play Therapy and Occupational Therapy). 

The real confirmation that any of this is working is when my son grows up to be a happy well-adjusted fully functioning young adult.  But, for now, I think it's working well.   Oliver is very very happy these days, a huge change from where he was even two months ago.  For that, I am thankful!

Bennett's Blended Menu

Wednesday, June 22, 2011

:::Edit: Thank you Olga, Sandy, Lydia and Nicole for your stories and encouragement!  It means so much to hear how your children are doing with eating and overcoming both CF and g-tube weaning challenges.  I have so appreciated your insights and advice!:::

Bennett's menu was put in place at the hospital.  We have kept it about the same since we've been home, except for a few substitutions.


 
For breakfast, he has Blended Pancake, a Nutrigrain bar and Chocolate Milk with Vanilla Carnation Instant Breakfast.  When we feed him, we feed in "rounds."  It goes: 1 bite of pancake, 1 bite of Nutrigrain bar, 1 bite of pancake, 5ml of drink.  We continue providing his food in this structured manner until the time is up or the food is gone.

For lunch, he has Blended Kraft Macaroni and Cheese, Ritz crackers (or Cheeto puffs) and Chocolate Milk with Vanilla Carnation Instant Breakfast.  Again, the feeding pattern is 1 blended bite, 1 chewing bite, 1 blended bite, drink.


For snack, his menu is as follows: Greek Yogurt (the most fattening yogurt one can find), Honey Nut Cheerios (or Fig Newtons) and Chocolate Milk with Vanilla Carnation Instant Breakfast.  Each meal, we typically get around 6-10 rounds of food.
For dinner, he gets Blended Kraft Macaroni and Cheese (made with as much whole milk and butter as possible) or Blended Sweet Potatoes, tiny Cream Cheese balls and Chocolate Milk with Vanilla Carnation Instant Breakfast.

When I was told by the hospital what supplies we needed for when we got home, I was told that we need a scale...a blender (such as the Magic Bullet)...


 a chair with straps, a tray and a place to properly place the child's feet...


and cans of Duocal (3 cans per month, as matter of fact).


So, we have to prepare Bennett's food daily.  And here's how we do it.  This is how we blend Bennett pancakes.


First, we made pancakes.

Then, we begin to tear it up and put it in the Magic Bullet.


 Yum!


Then, we add milk and butter...


...and syrup, of course.


And turn it on!  Who could not resist the taste of pancake blended to puree??  Once done, we divvy up the pancake into small containers.  Before each meal, we put one tablespoon of Duocal in each serving.  Then, we must weigh the food and document it's weight before and after feeding.

How exciting to sit down to a meal of blended food??  If this food looks good in pictures, let me tell you, it's even more appetizing in person! Ha!  I'll do whatever I need to do to get my kid to eat and gain weight...even if it meals "Magic Bulletting" it!  Want to come over for dinner??

Hunger Pains?

Tuesday, June 21, 2011

Bennett had a great eating day today!  He drank two full ounces of milk in one setting tonight.  And, he ate two whole fig newtons when given it as a "trial" food during his Speech Therapy session.   It is clear this feeding therapy and feeding protocol is working. It might be that he's actually getting hungry!

His discharge weight was 25 pounds 6 ½ oz, so with today’s weight of 25 lbs, 10 oz, that is a gain of 13 gm/day over the past 7 days.  The Dietitian thinks we may cut his tube feed down again depending on what his calorie count looks like in the next few days.

The mother of a formerly tube fed child, Olga, commented on the blog a few days ago with a great question.  And, to my delight, she posted her son's story tonight.  I wanted to reply to the question Olga asked because I imagine alot of people will ask us this question in the future.

Olga originally asked, "I'm wondering whether your protocol includes any calorie reduction so that there is an *internal* motivation to eat? (in other words, so that your bub is allowed to be naturally hungry, like we are before a meal, and then eat in response)?  (Read Olga's story here: http://bennettgamel.blogspot.com/2011/06/standoff.html#comments)

The answer is ultimately, yes.  Almost as soon as we were admitted into the hospital, the staff began trying to figure out how they could create a natural hunger sensation within Bennett.

We started first by moving all of his feeds to nighttime except for one during his nap.  This way, he would be more likely to be hungry during the day.  This may or may not have worked, I'm not sure.  I never really saw signs of hunger.  But it didn't really matter.  Bennett ate anyway.  Whether it was the toys or hunger, Bennett did eat eventually.

Within a few days he was eating about 300 calories per day.  So, as soon as he was eating about 20% of his daily caloric needs, his nap feed (and only day feed) was taken away. 

Bennett continued to do well.  He was never forced to eat.  But he was given every opportunity to be motivated to eat.  Within a week, he was eating enough that his nightly tube feed was cut back by several ounces.   We returned home him taking 720ml at night and 0ml during the day rather than the 585ml at night and 585ml during the day.

While we have had the opportunity at home, we have resisted the temptation to up his g-tube feed at times when it has been difficult to give Bennett a meal properly.  Only once this week have we increased his tube feeds any amount and that was only after two meals had to be missed due to unforeseen circumstances.  The situation is that we need to keep from giving him any more formula through the tube than is necessary.  Whatever we give him through the tube (or as snack no matter how much), can had a huge impact on any hunger sensation he has.

Just today, I took Bennett down to the Peds office to be weighed.  Turns out he has gained 5 ounces in a week, more than enough.  If everything from his calories look good, our Dietitian is going to recommend we cut back his tube feed even more.

The goal is to give him enough food so that he doesn't lose weight, but not more than he needs to stay hungry.

Having said that, I have been very concerned about having a child who is not hungry...ever.  I remember as an infant, he would cry.  I would always think that he was hungry.  Every time, I would find that he would not drink much, if any at all.  And his crying was almost never ever because he was hungry.  It was always something else.

It really hit me one day when I was out shopping all day with family and accidentally skipped one of his bottle feeds.  He didn't make a peep.  He didn't even seem to notice.  I remember feeling concerned.  How does a tiny baby not want to eat??  Is he not hungry?  This happened several times, which was alarming.  Why does my baby not want to eat? 

From what I understand kids with Cystic Fibrosis often do not feel very hungry.  Doctors think it has to do with the mucus in their bodies.  But Laura, one of the directors of the Baylor Feeding Clinic said that CF is not the only cause for many kids who do not eat not to be hungry.  She said, "it is the hallmark of our kids here not to be hungry.  They just don't seem hungry for whatever reason.  We don't know why.  But we work with that."

I have many times tried to create in Bennett a hunger.  Several months ago, in my desperation not to be admitted into the hospital for four weeks for feeding, I worked with a dietitian to see if we could create hunger in Bennett well enough that he would eat properly.  We cut back one of his feeds very several weeks to see what would happen.  We added Periactin to see if that would help. 

For a short while Bennett seemed to pick up in his eating, some.  But very quickly it was obvious that he wasn't hungry enough to eat enough to sustain him.  Shortly before our admittance, I put him back on his full feeds.  The reality is Bennett will eat, but he just doesn't eat enough to stay alive.

I learned alot about eating issues when I was in the hospital in Dallas.  I learned that some kids don't eat because of poor experiences they have had with eating (such as choking or throwing up).  Some kids don't eat because of poor skills (such as not knowing how to properly chew or swallow).  Some kids don't eat because of texture issues (not liking the feeling of something squishy in their mouth). 

It is so strange for a child not to eat.  Many people have asked us, "have you given him a cookie?!?"  One sweet woman asked to hold my 10 month old baby during lunch so she could "try" to feed him.  I guess she was convinced that I wasn't doing it right, as though she had the magic touch.  It's counter intuitive to think that Bennett would not be hungry and would not find pleasure in food.

But, whether it be a oral motor skill issue, a texture issue, an past experience issue in addition to not being hungry, Bennett will not eat enough to keep his body healthy.  So, we are having to help him work through these issues through a behavior modification program.

It seems cruel...to lure him to eat through toys.  Obnoxious toys.  Obnoxious TV.  Doesn't this take away from the shear pleasure of eating??

It all seem counter intuitive.  But it's not.

The reality is eating has not been pleasant for Bennett.  He struggled with severe reflux for a long time.  He does not seem to have a natural hunger cycle that keeps him hungry enough to complete a meal.  And his eating skills have been lacking so much so that he often has tired of eating before is necessary.

This protocol creates in him a pleasantry that was not there before.  Now, he looks forward to eating.  He gets to play and sing while eating.  Now, he has success with eating.  He eats foods he likes and can eat a good amount of.  And now he is getting hungry.

He eats at the same time every day.  He is encouraged to eat the same amount everyday, if not more.  His tummy is stretching.  His brain is being trained.  He is learning how to be hungry...how to eat...and how to enjoy food.

Eventually, he will do this one his own.  That is the goal.  The nice thing is I saw some element of that today during Speech Therapy. 

The Speech Therapist and I gave him two fig newtons just to nibble on.  He hadn't had his morning feeding yet so there was a slight chance he could be hungry.  We "trial" all foods with the Speech Therapist before presenting it in a meal just to confirm he has the skills to eat the food during the feeding protocol.  That child ate two fig newtons...a HUGE deal for a child who, when left to himself, would eat less than one.

I am convinced that this works, at least for Bennett.  This system is not for everyone.  It is neither needed for everyone nor helpful for everyone.  But it works for Bennett.

If I could have had that child eat another way, I would have.  But since nothing I offered him seemed to work, I pulled in the big guns.  That seems to be working.  However, only time will tell!


:::P.S. Olga, that is a wonderful story about your son!  I think you did that beautifully!  I only wish my efforts to do that went as well!  It seemed Bennett just could not "latch on" naturally with a hunger drive.  But some elements of what you did is what has been helpful with Bennett.  I've never forced him (although I do motivate) to eat.  I think food should always be pleasant.  Thank you for sharing your experience and asking your question!  I'd love to know about other feeding programs out there, including the one you work at!:::
 

standoff.

Monday, June 20, 2011

My brain is mush. It's hard to even concentrate. I think this is a pretty clear sign I should be asleep in bed. But I cannot retire to bed until I share an update.

Olga asked a very good question regarding motivating Bennett internally versus externally to eat. I am going to table that question until tomorrow but I will write more. Having my brother in town recently reminded me how important it is for me to really wrap my brain around what we are doing with Bennett. It's a bit difficult to articulate if I don't really understand why we are doing the things we are. So, I will write more about this tomorrow and explain some philosophy behind the method. I am also very interested to hear others' thoughts, questions and concerns. I have gained such wonderful confidence and knowledge from blog readers and those Momma's I have met online. So, I appreciate the questions!

For now, I will just share that Bennett is still doing well.

But we did have a good ole standoff yesterday. Think 15 minutes of crying in the highchair.

He did not want that stupid bite of Mac and Cheese and wanted his father to leave him alone. Eventually, with the right toy, he did end up relenting. (Mind you, he ate 34 grams of Mac and Cheese tonight so clearly it wasn't he Mac and Cheese he didn't like.) We are pretty sure he was just testing his boundaries and eventually gave in. The staff at the hospital warned us of this and just reminded us to stay on course. Kids often return home and pitch fits. This is nothing like it was at home before they came to the hospital and they do not like this new change one bit.

Bennett threw another 7 minute fit tonight. But, again, he relented. I just had to stay incredibly patient and pretend not to hear him.

We also realized this week that we cannot feed him in between meals. The staff had instructed us not to do so. But it's hard to refuse those little puffy cheeks and round blue eyes when all he wants is a bite of our food.  How can I look down at my baby bird, mouth wide open and not feed him? 

But Brian and I feel quite confident that if we don't stop feeding him, even a few bites of our food, between meals, he is going to continue to pitch bigger fits.  He has to know that the only time he gets food is during his meal times.   Otherwise, he could begin to believe that he doesn't have to eat during his meals since Mommy and Daddy are going to feed him later. 

It's hard to deny a child who "doesn't eat" food when all he does is want your food to eat.  But I joke that Bennett had two years to eat correctly.   And since he "chose not to," he's gotta go through all of this work.  And if I'm gonna have to stay on the plan (blend the food, get up early to prepare, feed him 4X's daily for 25 minutes), I figure he should have to too.  The reality is that we don't want to do anything that might sabotage his or our success with this program.  So, if the protocol says not to feed him in between meals, we're not going to anymore.  It will be hard to deny him.  But that's what Momma's do...they keep the bigger goal in mind, even when it means overlooking the temporary one.

Thankful things.

I had this blog post started weeks ago but could not seem to find time to finish it until now.  There were many things I am thankful for from our time in Dallas.  I had started a running list of things I was thankful for but ended up moving from thankfulness to survival.  I find being aware of your surroundings as being necessary to be thankful.  And during our last two weeks at the Baylor Feeding Clinic, I was more in survival mode than I was in aware-of-your-surroundings mode.  Thankfully, God gives us reprieves and I am back to being more aware of what I am doing, where I am going and what good things God has given me.
 
So, here are just some of the other things I am thankful for...

I am thankful for gifts, given by friends to the boys while Bennett was in the hospital.  It was wonderful to have new toys to play with as the kids made the transition from the comforts of home to the uncomforts of living in a medical facility.

I am thankful for Karem, Dana, Bethany, Tiffany, Ashley and Uncle Darryl and Aunt Laurie for the gifts they showered both the kids.  


Oliver did not feel left out one bit.  He received his own little gifts...although he had no idea why he was receiving them.  Thankfully, both children considered all of the gifts theirs to share.  Bennett and Oliver are such wonderful friends, as much as they are brothers.  They were very happy to share each others' toys.

I am thankful to my friend Karem and friend Tiffany who both share their love through gifts.  Right before I left to go to the hospital, Karem gave me a wonderful book to read while I was there, "Water for Elephants."  And Tiffany gave me this bag and some other thoughtful goodies and food to use while I was away.  These little "happies" not only made me happy to receive, every time I used them at the hospital, they made me smile.  The gifts reminded me that God cares for me through wonderful friends whom I love. 


Another thing that made me smile many times over at the hospital was a handmade gift from our friend Joy...amazing food!  Joy sent us up food one weekend when we had to return home.  Her muffins were amazing.  And her dip and bread was just scrumptious!  I am so thankful for the labor of love through Joy's cooking while we were at the hospital.