Friday, January 21, 2011

Great Day!

Harlie had a GREAT day today!

Feeding Therapy - 9:30 - 10:30

Today Allison worked on self-feeding.  She used a three-section plate containing oatmeal, fruit and milk (high calorie Pediasure).  The goal is to teach her that each section gets a turn with no skipping.  Allison drew three circles on a piece of paper.  After a bite she earned a sticker to put in a circle.  After earning three stickers in a row, she earned a prize, which she got to choose.

Of course it wasn't as simple as all that.  She was hardly cooperative at first.  And it took a few other tries before we reached the sticker/prize plan.  She doesn't like to eat when we're feeding it to her.  So our biggest hurdle is that she lacks the motivation to feed herself.  But, when she saw the miniature slinky, she grabbed the spoon and took a bite!  WOOHOO!!!

She ended up eating 2.8 ounces total almost all by herself!  It really was great.  And even better is that we only have to try that at home two times by next Thursday.  Awesome!  That gives me some time to go and collect some prizes to help motivate her to take her bites.

The Grocery Store - 11:00 - 11:30

On the way home from feeding therapy, Brandy and I decided that we wanted a vegetable tray for lunch.    She suggested that we all go to the store together.  So, we did.  Right as we walked in, I saw one of those little kid carts.  Harlie RARELY goes to the grocery store.  So, we put her in front of the cart and away she went.  She was slow, but she walked the entire time with no complaints.  In fact, she LOVED it!!!!

We started in the produce and I picked out some cucumbers, broccoli, carrots and a red bell pepper.  Harlie was behind me and decided that we needed a green bell pepper, too, so she picked one out and put it in her cart.  Then she smiled.  Oh, it was so cute!

Then we headed to the canned fruit aisle.  She stopped and pointed at the jars of applesauce.  It was so cute to see her recognize a food that she eats!!!  Of course, we had to walk down the candy aisle.  Even if I don't get anything, I always have to walk down the candy aisle.  While I had stopped to check out some new chocolate, Harlie grabbed a bag of sweet tarts and put them in the cart.  Ah, we had to laugh.  She doesn't eat it - never has - has no idea what it is - but wanted to put it in the cart.  It was the prettiest bag - colored with purple and yellow and pink, etc.  Funny stuff.  They sure know how to package things to appeal to kids.

She got such a kick out of putting stuff in the cart.  And she loved putting the stuff on the belt to check out.  I normally don't care for going to the grocery store.  But she made it so fun.  And she walked the entire time!  It was great!

11:30 - 2:00

We went home, unloaded the groceries and then I headed to pick up Cooper from preschool.  We all ate lunch and then I put Cooper down for a nap.

At one point, I took Harlie to the potty.  She stood on the step stool and looked at herself in the mirror.  Then she touched her chest, right under her trach.  Then she pulled her shirt down - with both hands - to look at her heart scar.  After looking for a while, she pulled her shirt up to her trach (higher than it lays naturally) and then signed, "better."  Did she mean that it is "better" to cover the scar????  Seriously?  I signed "pretty" - but then I felt kinda stupid for doing that.  I don't want her to think of her scar as ugly or that it should be covered up, but I also don't want to discount her feelings.  I tried to come up with something to call it.  I met someone years ago that called her son's scar his miracle line or magic line or something like that.  So, maybe we'll call it her miracle mark or something.

Then she got down and left.  I told Brandy about it and then she told me that earlier in the morning when Brandy was brushing her hair and teeth, that Harlie examined one side of her face in the mirror, and then slowly turned to look at the other side.  She did that several times.  So, it appears that she has noticed that they aren't the same.


Ugh.  I don't want her to be ashamed or embarrassed or feel anything negative about her scars or her facial features.  Every scar has allowed her to live and be happy.  I want her to be proud.  But I know she is far too young to understand any of that.  

That wasn't so great.  


At 1:45 I went to pick up Murphy from school.   Then we came home to get Brandy and Harlie for more therapy.   And my Mom came over to watch Cooper.

Physical Therapy 2:30 - 3:30

She did great.  Last week, Traci had a hard time getting Harlie to cooperate and follow instructions.  After a few minutes Traci looked at me and said, "Is her hearing aid on?"  I checked, and nope.  Sure enough the battery had died.  She was much more cooperative after I put a new battery in.  Go figure.

This week she listened and followed instructions.  She is so happy to go to physical therapy now.  She really has a lot of fun there.  Today Traci had her walk on the treadmill with an incline.  She did that for five minutes!  She also does exercises and weights.  She's so cute when she works out.

While Harlie was in therapy, I sat out in the waiting room with Murphy working on his school work and reading.  As luck would have it, Thursday is also Murphy's library day at school.  So he always has new library books for us to read while we wait.

During PT, Harlie's new speech therapist came out to ask me some questions.  While I was talking to her, Murphy said he needed to go to the bathroom.  To get to the bathroom there, you have to go through a door, then there is another room that has the bathrooms, a water fountain and a long hallway that leads I don't know where and an exterior door.

I have no idea how much time went by from Murphy leaving till I heard his voice.  At first I thought it was another patient there crying.  But it sort of sounded like Murphy.  So, I thought he had left the bathroom and gone back to where Harlie and Brandy were.  Then I realized that the voice was screaming "Mommy!!!"  So the speech therapist said, "Oh no, he might be locked in!"  So, I got up and ran back there and yes, he was locked in.  He had been screaming for me and banging on the door.  Oh, he was SO upset!!!  I felt so horrible!!!!  I had no idea how long he had been locked in there!

He said he saw the EXIT sign and tried to get out that way - thinking he could just go around outside the building and come back in through the front door - but that door was locked too.  He could have unlocked it himself by turning the deadbolt, but he must have been panicked by that time.  Oh, geez!  Poor kid!!!

Speech Therapy 3:30 - 4:15

Harlie's new speech therapist is Becca.  And I really think they hit it off.  She was very engaging and within minutes, she had Harlie saying words.  She was wearing her speaking valve (PMV) and some words were so clear that I could understand what she said by just hearing her (and not looking at her sign).  Like - yellow, open, bye-bye, eye and ear.  There were more, but I can't remember right now.  Bummer.  She really did great and it was wonderful to hear her talking so much!  I couldn't completely focus on her because Murphy was reading to me.  But, I could totally tell that she was having a good time and hopefully learning at the same time.

Her therapist has to get authorization so I don't know if that will happen in time for next week's therapy.  I hope so, though, because I really feel like it was a good session.  Becca said that Harlie said 20 words total during the session.  Awesome!!!

My chiropractor appointment 4:30 - 5:00

Luckily, my appointment was practically around the corner from Harlie's therapy.  So, we put a movie on for the kids and Brandy sat in the car with them while I went in.  And I am so happy to report that I can start running again - small mileage, flat terrain, easy running.  I'll see how that feels and then go from there.  I have a really good feeling that I will be fine.  I just have to remember to take it slow and not increase my mileage or speed too much, too fast.

Well, that's it for tonight.  I am falling asleep while writing this.  And tomorrow is another busy day!

Goodnight!
~Christy

4 comments:

Heather said...

what a great recap and illustration of how crazy your Thursdays are! great news on your running, great news on the progress that Harlie is making. I think Mirale Mark is perfect- she really is such a miracle.

Sue Mitchell said...

Geez, now wonder you're tired! It made me tired just imagining everything you did yesterday. Sounds like Miss Harlie is making great progress. I would have loved to have seen her in the grocery store (I hate going too so that would have made it fun for anybody!)

Susan said...

I'm glad you had such a great (if not very busy) day. I love the idea of Harlie pushing the shopping cart around the store. And saying so many words....WOW! It's fantastic! I'm so proud of Harlie.

Jennifer and Elizabeth said...

so happy to hear all the great and encouraging news!!! It really seems that the feeding therapy you are using it is A LOT like what Elizabeth went through in the intensive program. I'm glad Harlie is doing well at this moment!!!