Sunday, January 10, 2010


I think I might be getting a little worried about a few things.

One - is how darn protective Harlie is getting of herself. Her reaction to any kind of touching (getting dressed/getting undressed, hooking up her feeding, disconnecting her feeding, etc.) is getting ridiculous. The only thing I can think of is that she just doesn't trust us anymore. We have handed her over to complete strangers and she's woken up with her jaw wired shut and in pain. She just doesn't understand what it all means.

The good thing is that she isn't shutting down. Even after we have to struggle to get her pajamas on (for example) she reaches her arms out to be held. And many times it's a struggle to put her down. She wraps her legs around me and will not let go! And she is one strong little girl!!!

Her behavior has changed so much over the last few months. She's NEVER been this clingy. If I could, I'd put her in counseling! I can only assume that we will slowly earn her trust back at some point (if that's even the issue, of course). Until then she will wear us out with all the struggling. She can win some battles - but I have to feed her! And I'm not letting her sleep in her clothes. Call me mean. But, she's just going to have to learn how deal with this stuff. I wish she didn't - but that's the way it is.

Two - She still has HIVES! For crying out loud! We're going on an entire month with hives. I don't get it. It has now been two weeks since she stopped getting her antibiotic (which is what we thought was causing the hives). If they don't go away in the next several days, it's back to the doc and probably to an allergist or something. I've looked at everything she's been exposed to, and there is nothing that I can find that would be doing it. One of Harlie's nurses has been looking into a Latex allergy. That is something that develops over time with lots of exposure to latex. That would be horrible. Seriously. So, please cross your fingers that the hives go away very soon, and we don't have to seek further answers!

Tom and I have a feeling that she's just pissed off in general. Period. We think she's really annoyed that her jaw is wired shut. She just hasn't been her happy self since the surgery. She hates her constant drooling. And add in these stinking hives - she's miserable!

But there is a light! We have a date to get the wires out - February 10th. Nine weeks from her surgery date. Ugh. Can't come fast enough as far as I'm concerned.

Well, that's it for now. More later (of course)!

Take care,


Anonymous said...

Christy -- Alex had a very similar reaction after his distractor inserts. It wasn't his first surgery, but somehow something about it was different. I think sometimes these kids just do get a bit freaked out, and they need a lot of time to heal their sense of trust (which breaks my heart ...). We were fortunate enough to have a child psych stop by to give us some ideas, and they helped. Time helped, too. In the end, the best thing for us was a total change in scenery. We went to Disney. At first, he screamed at everyone he saw, but by the end, he figured out that they were only there to entertain him and not to hurt him.

I realize Disney isn't in the cards for everyone after major surgery, but I think they key was constant exposure to "strangers" who only wanted to be nice and didn't have any bad things to do. We kept up the wound cleaning and the bad stuff ourselves, and it just seemed to work out that way.

If you want to chat about what our child psych said, let me know.

Anonymous said...

wow christie, i am so sorry to hear that harlie is having a hard time, and you also. I want to let you know i dont know if Harlie is still having therapy, but Hannahs syndrome also came along with complete oral arersion, and tactile deffences, it was aweful for almost the first year hannah wouldnt let anyone touch her, she showed no effection at all, or wouldnt recieve any. The therapy wouldnt help because it was her nerves and im my opinion the experiences that she had been through, she acted like it with th edoctoors that she would see on a weekly basis. So i dont really know what to tell you other than we just let her do whatever, but she was also younger and eventually she wanted the attention and effection. So maybe just give her some time and she will come back to you. Im sorry i hope everything gets better soon, take care thinking of you all!!!

Susan said...

She's 3 and if she's anything like my kids, probably doesn't like to stop what she's doing to eat, doesn't want to put on jammies cause that means bed time, doesn't like to get dressed, well who knows why but my kids did that (I think as a control thing). You throw in the fact that she just went through a massive surgery and her jaw is wired shut, she's got hives and probably doesn't feel that great....well I guess a little being difficult seems justifiable. But I understand your concern. I bet things are going to get better when the wires come out. Oh, and since she has hives she might not like to be touched because it might make them sting or itch. Any chance she could be sensitive to the metal they used? I have metal "allergies". Hope things get better. Hugs.

Anonymous said...

All kids go through different phases, with or without surgery. Maybe Murphy didn't go through the clingy stage, but both my girls did the same thing, right around age 3 (no surgery involved with either, except to surgically remove them from my leg!).

And sometimes you have to choose your's *ok* for her to sleep in her clothing now and then, especially as that may mean those clothes are a comfort to her when the rest of her is uncomfortable. Or it could mean she's just growing up and wanting to make a decision or two now and then on her own.

She's being a typical toddler...which is a good thing!