Wednesday, December 29, 2010

Christmas Pictures

Here are some random Christmas pictures.  And there are lots of them.  I will write a proper post later.  No time right now for that.  

Harlie playing while we were in line waiting to see Santa.  She was more excited about this cutout than Santa.  Maybe next year will be her year to totally "get it."

Do you remember the suction machine filter I found in the tree a few weeks ago?  Well, a few days before Christmas I found a sock in/on the tree.  Someone likes to do their own kind of decorating around here...

This is an ornament that Harlie made in school.  It is the sign for "I love you."  Isn't it adorable????

This is just a picture I took of Harlie.  I think she might be learning how to get her picture taken.  You can really see how "off" her jaw alignment is.  Ugh.  At some point, we are going to have to face that challenge again.  We just aren't ready yet. 

Christmas morning!

This was a typical scene during Christmas day and the day after.  Harlie LOVES Buzz Lightyear and had a very hard time sharing.  

My family arrived in the afternoon.  We do a name exchange but don't share who got who until Christmas day.  This is Tom opening his present from my Mom.  She did a scavenger hunt for him.  It was so much fun!

Finally!  He found his gift! It was a car organizer he wanted to hold his work stuff.

Here are my three nieces, Maggie, Kelly and Jordan, all showing off the scarves my Mom made for them.

Just some of the family.  My Mom, Jordan, my sister Sandy, Rick (Sandy's husband) and Pap Pap.

My Aunt Opal and Tom's Mom with my big brother, Bruce playing with Cooper.

Nancy, Bruce's wife.

My younger brother, Cabell.  Cooperative as always.

My birthday is on Christmas and Nancy's birthday is the day after.  Here are our cakes.

One of Harlie's FAVORITE gifts - a head lamp that was in her stocking.  She LOVES doing shadow puppets.  The head lamp is perfect for that.  But she wears it just hanging out watching tv, too.

Some pictures of Pap Pap playing with Harlie and Cooper.


Murphy, Grandma and Harlie.

Harlie and Murphy playing with one of their gifts - Zingo.  They LOVED it!

Checking out each other's boards.


And Harlie wins! 

I have a lot more to say and tell you about, but there's just no time now.  But, I thought you might enjoy some photos in the meantime.

I hope you all had a very Merry Christmas!

Friday, December 24, 2010

Feeding Therapy

Last night at dinner she refused almost every single bite.  It is a true battle.  And I don't want to fight her anymore!  She seems to swallow comfortably.  She's not sick, so I don't think her throat hurts or anything like that.  She refuses all food offered equally, so it's not a taste thing.  So, it's a control thing.  She gets no reward from eating orally, and she's probably tired of being forced to do a whole bunch of things she doesn't want to do.  So much of me can't blame her.

But I want her to eat!!!  I want her to gain weight.  I want her to be as "healthy" as she can be.

We had feeding therapy today.  We tried something new.  I left the room and watched the session from the viewing room.  That was weird.  But neat at the same time.  There is a camera in the room and in another room down the hall there are all these tvs and phones.  I can hear and see what's going on during the session.  And if I want to talk to the therapist, I just pick up the phone and she can hear me.

Harlie definitely refused some bites.  But she didn't push the spoon away like she does with us at home.  Allison just waited her out and sat there with the spoon for minutes at a time, until Harlie realized that nothing was going to happen until she took the bite.

At one point, I had to go in to suction her.  Feeding was going pretty well prior to that.  And as soon as I entered the room, she went back to refusing the bites.  After I left, she went back to eating.

Another thing - at home we have to suction A LOT during feedings.  Most of my SN moms would fear that means aspiration.  But, I know it is completely behavioral.  She makes herself cough to stall the feeding.  We have to put down the spoon, turn the suction machine on, suction, turn the machine off and then pick up the spoon again.  A week or so ago I started pausing the TV every time she coughed or needed suctioning or refused a bite.  Watching a movie/show like this is agony!  Not that I'm watching, of course, but I don't see how she could possibly enjoy the show like that!

Well, during this session she hardly coughed at all.  And I only suctioned once, and it wasn't even necessary, really.  UGH!  That girl KILLS me!!!

After this session, it is pretty clear that my presence changes her behavior - and NOT for the good.  And, I gotta be honest here - that hurts.  And as much as I would love to make myself disappear for every feeding, that just isn't going to happen.

So, we trudge forward.  She is completely capable - in every way - of eating orally.  We have to let her know that she is not getting control of this.


No more discussing her feeding or her behavior in front of her.
If we have a hard day in battle, and I don't feel I have the patience for oral feeding, then I tube her that night.
We wait.  We wait her out for her bites.  Please God grant us patience for this momentous task.
We go back to smooth purees to take texture preference out of the equation.

Oh, the joys of special needs.

On a positive note, we weighed her today to see if all the calorie boosting we've been doing has had any impact.  And it looks like it has!  She gained a little more than a pound since December 1st.  So, that's a relief.

And I had lunch with my friend, Heather.  That was much needed girl time.  As usual, we had a great time with lots of laughs.  Thanks, Heather!

Tomorrow is Christmas Eve.  And with any luck we can enjoy most of the day.  Not sure how feeding her will go.  Grandma and Pap Pap are coming tomorrow.  We are so looking forward to having them here to celebrate Christmas with us!

Please wish us luck with this feeding thing.


Wednesday, December 22, 2010

Christmas Pictures

For the first time ever, I got the kids matching Christmas pajamas.  Oh, I thought it would be SO cute to get a picture of the three of them in front of the tree.  Maybe in a few years that will work.  But certainly, no time soon.  

So, there's your Christmas pictures from The Holton Family.  Pretend it's a card, that you just received in the mail.  Because that's not going to happen, either.  I haven't mailed out Christmas cards since 2007.  I've gone paperless.  It's all about the environment, I say.  No, really it's about the time and the cost.

Merry Christmas my friends!

Sunday, December 19, 2010


Today we took the kids to go see Santa.  

I knew Cooper would cry, so that wasn't a surprise.  But I didn't expect Harlie to sit on Santa's lap.  Murphy was adorable and brought his list to give to Santa.

It was a fun little family outing.  And just what I needed.

I have had a hard time getting into the Christmas spirit this year.  Life is just too busy.  So busy that you can't stop and think.

On Wednesday we had new carpet installed in our living room.  The living room carpet has really taken a beating since Harlie came along.  Tube feeding is messy business.  Formula spills, drips, and tubes come undone.  And there were those years of her vomiting 10+ times a day (40+ at its worst).  Trust me when I say the carpet was disgusting and should have been replaced years ago.  So, new carpet was our gift to each other and to the whole family.

No, this isn't the color we chose.  It is the padding.  I didn't get a picture of the carpet after it was installed.  Will have to do that later.

What?  You don't put your Christmas tree in your kitchen?

The installer was late, he was a stranger, which stressed me out, and I couldn't leave to run errands.

On Wednesday night, our weather forecast was an expected three to five inches of snow on Thursday.  So they canceled school.  I get that they want to be safe for the kids.  But, we woke up in the morning and there wasn't a single flake falling!  I think we ended up getting about three inches.  So they canceled school on Friday, too.  Ugh.

Cooper was chomping at the bit to go outside.  So, while I shoveled the driveway, the boys played in the snow.  They both loved it.  We actually got Harlie outside, too!  I couldn't believe it.  Those pictures are on the other camera.  I'll have to post them later.

On Thursday night, we tried to get a picture of the kids in their matching Christmas pajamas.  Talk about exhausting!  I will have to upload those pictures tomorrow.  It is too late now.  I'll post more tomorrow.

Good night!

Hardware Removal Day

I'll talk about pre-op day first, then I'll blog about today... Yesterday we did the whole drive through testing thing.  That wa...