Thursday, June 4, 2009

Pre-Op day and more feeding stuff

Tomorrow morning we head to DC for Harlie's pre-op stuff. Since they just did an ECHO and EKG in April, all we really have to do is blood work. Then we meet with the surgeon again to give consent. That should be really quick as I don't have any questions since we went over all that in April as well. Then we come home.

Tom's mom is coming into town tomorrow afternoon/evening and she will stay with the boys while Harlie is in the hospital. We have some birthday parties to go to on Saturday, then we are going to a water park on Sunday, then we leave Sunday evening to go back to DC. We are staying at the Ronald McDonald House. And as of right now, Harlie has to be at the hospital at 6am on Monday morning.

It is hard to believe we are here again. While I certainly dread it, so much of me just wants this to be over and behind us. I am hoping for no more than a three week recovery. That would be great.

Feeding Update

So, I called Harlie's feeding therapist and discussed her behavior. She said it is very common, which is good. She said that feeding for her is work. Swallowing is work. And she has weak muscles, which means she fatigues quickly. She sees no point in this feeding business and she is doing what she must to get out of the situation. She also said that as soon as she is recovered from this surgery, we should seriously consider upping the intensity of her feeding therapy. There is a day program at the Children's Hospital here in Richmond that is offered. I would take her every day Monday-Friday for 6 hours per day for 6 to 8 weeks!!! Whoa. That's a lot of therapy. I really don't know how I'm going to do this with Cooper. Anyway, I think we're still a bit away from this, but I know that this is definitely in our future. She also said that initially, we could up her therapy to two times per week until we can get into the program.

So yesterday, Harlie's past feeding and speech therapist (Beth) came by for a visit. It was SO wonderful to be able to talk to her at length about this. I can't tell you how much I value her feedback and advice. She gave me even more insight into Harlie's behavior.

I could talk about this forever, in that so much of this is fascinating stuff to me. The psychological stuff behind it, I mean. But to be brief, she will escalate her bad behavior, trying to break me, and escape the situation. So, I cannot break. I cannot let her win. And by getting frustrated with her, I was just feeding the negative behavior. I was giving her what she wanted - a reaction to her behavior.

So, the next time I feed her (our new therapist told me to table it until after her surgery - if we weren't on the phone I would have kissed her - and we don't know each other very well) I can't show any emotion. I have to sit there with food on the spoon until she eats it. And no matter what she does, I have to act like it doesn't bother me, I don't notice and I don't care. And she can't get down or play with anything until she takes the bite. Then, after she finally relents, and takes the bite, I have to praise her, reward her, give her a few minutes of a break, and then do it again.

The theory is that it might take 20 minutes till she takes the first bite, 18 minutes the second time, 15 minutes the third, 10 minutes the fourth, and so on, until she realizes that I'm not budging and it will be easier if she just takes the bite so she can go play. It's a good thing I'm not busy, huh? Ahh, I was getting bored with all that free time. This will be the perfect solution.

Anyway, while Beth was here she wanted to feed her. She said that she wanted to see her eat. So, I left the room and let her feed Harlie. And, of course, she did great. She finished all the baby food in the bowl (it was probably one ounce or more). Beth said it was so weird to see her eat. Weird in a good way, of course.

Beth also said that Harlie acts up with me because she knows I will love her no matter what. (Sarah - you are right). I guess knowing that makes it less hurtful.

And another interesting thing Harlie's speech therapist told me, is that taste is 80% smell, and she most likely isn't smelling much with her trach. So, that would explain why she has no reaction to what the food is. Hmmmm.

Oh, I was doing some searching and came across a study on feeding issues. It had this sentence in it:

For some children, medical problems such as reflux, long-term tube feeding, cardiac or
respiratory problems can contribute to food refusal.

Great. She's got all that stuff. Super.

Well, I will have more later. Tomorrow morning will be here very quickly and we have a long day ahead of us.


Pam Walsh said...

Good luck with everything. Haven't talked to you in a while, but think about you all often.

Sarah Gunn said...

YES! I made the blog and I was right, good day :-) ha!! Hope you guys have a wonderful weekend. Good luck next week, we'll be thinking about you.

Anonymous said...

Just checking on you all and letting you know we are thinking about you. Mike and Marcy