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Home again.

Thursday, May 19, 2011

We are home tonight.  It feels a bit weird to be home.  I feel like my left arm is missing.  Bennett isn't with us.  So, it's like we have an only child.  My heart is still with Bennett back in Dallas.  It's hard to leave our little guy behind.  But, he is best there and we will be back soon.

Brian, Oliver and I came back home tonight in order to make important appointments tomorrow, mow the lawn and attend our CF Walk on Saturday.  In order to continue to help Oliver, we are continuing his play therapy sessions each Friday.  It also gives us an excuse to come home weekly to check on the house and monitor our mail, pay our bills, etc.  Brian has a meeting regarding his PhD program.  I have an appointment tomorrow afternoon to get a cast.

Oh, a cast.  I am both excited and dreading it at the same time.  My foot is really hurting these days - think knife in the ankle with a bit of a burning sensation.  Pretend your ankle is a fruit roll-up and is being torn from side to side.  That's how it feels.  So, I'm anxious to get off of it.  I'm not so anxious to be immobilized.  Target's scooters never work.  I don't like nurses in our hospital room until after 8am.  And I can't stand the idea that I can't drive for several weeks (although, Brian will likely hate it more since I can be quite the backseat driver).

It's funny that we're having our CF Walk the day after I get a cast.  I guess I haven't actually considered I'm most likely going to be unable to walk.  But that's not going to stop me from having a great time.  We are all so very excited about the walk.  It is going to be awesome!  One thing does, however, does have the potential to stand in our way: Rain. 

Forecasts have waffled between 30-50% chance of rain.  I'm doing the anti-rain dance like nobody's business.  I am praying that God would just open up the skies and let the sun shine!  We'll see what he chooses to do.  In the meantime, we're coming up with a backup plan should God decide he's God and choose to do something else other than my plan.

We left tonight after Bennett went to sleep.  He was exhausted today.  My mom came this evening to learn the ropes of the hospital and take over for us.  She's amazing and will do wonderful.  In fact, leave that woman in a messy, unorganized room for a few days and she'll have it so meticulously organized it'll look like Mary Poppins had been there.  I can't wait to see what magic she does while we are gone.  She is not one to get bored...or to allow unorganization to fester. 

Bennett had another wonderful feeding day today.  He is slowly increasing his volume.  The therapists continue to work with him on drinking.  They've come to the conclusion that he does not like Spagetti-Os or his formula by mouth.  So, I think both of those things are being nixed off of the list.  One thing that did get added today, however, was Duocal.  Duocal is a high calorie, protein-free nutritional supplement that can be added to foods or beverages to help kids gain weight.  In small doses, it's hard for kids to know it's in there.  The hope is that the staff can continue to give Bennett the necessary calories by mouth, rather than by g-tube.  Having Duocal in a food allows less food to be eaten and the same number of calories still taken in.  Bennett is still getting his feeds during the day and night (minus one).  But is showing lots of signs of hunger and an interest in food.

It is fun to hear what the nurses and therapists have to say about Bennett.  It's probably similar to the way parents feel about their school aged children at teacher's conferences.  It's interesting to hear others make observations about your child, an extension of ourselves.  We have noticed Bennett is really outgoing and is incredibly playful.  He loves to walk down and back the hospital halls giggling, running and playing hide-and-go-seek.  The medical staff love him and even his primary speech therapist said, "if I have to be stuck with a kid for two hours a day, I'm glad I'm with Bennett." His therapists find him to be very compliant. 

I ran into the Feeding Clinic Director today.  She is the first person I ever talked to when I called to ask questions about the program.  I continued to talk to her through our evaluation and, later, through our authorization process.  She said to me today, "So, I guess you heard that Bennett's Speech Therapist believes he's just gonna 'rock it' here."  I replied, "that is awesome.  Yes, I'm getting good reports."  She responded, " I think, Breck, this was the very best time for you to have brought him here."  Ah, I exhibited that infamous parent-glow after the Director said this to me.  As a parent, I am faced with choices constantly: what my children eat, what my children watch on TV, who my children play with, what my children do in their free time, etc.  It was really nice to know when it came to "what my children need to function better in life", I may have gotten this one right.  We will see.  He's only on Day 4.  But everyday as been better than the best.  I'm hoping for good results!

Praying for no rain on Saturday...

4 Responses to “Home again.”

  1. So sorry to hear about the cast! But thrilled to hear Bennett is doing so well.

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  2. So happy to hear that Bennett is doing well. We love the updates and will continue to pray for you guys.

    Duocal was one of the best thing for our daughter. The formulas didn't work, and so many other things that we tried didn't work, but duocal was awesome. (We also used mtc oil, a medium chain triglyceride, with no taste and extra calories.) We made malts every night that had about 400 calories in a 4 oz cup. PRAISE THE LORD it worked! We hope it works for you all too.

    I can't wait to see how God uses this time at the clinic with your family to show his greatness!

    Have a great time at the walk this weekend. Will pray for complete healing of your ankle. Look forward to seeing your update of your weekend. Take care and so glad to hear things have started off well.
    In His Strength,
    Tiffany

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  3. HOORAY to ALL of it! And yes, no rain!!

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  4. Go Bennett Go! Fabulous news!!!

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