Monday, February 22, 2010


I haven't been feeling like my normal self these past few days. I'm tired. And not the kind of tired that you get from getting too little sleep the night before. I'm feeling so "off" that I totally forgot about her hearing appointment this afternoon and I am kicking myself!!! The last time an appointment had to be rescheduled it took two weeks!

Last week Harlie had private speech therapy and feeding therapy and went to school four days (Tuesday through Friday). Getting in her private therapies really complicate my schedule. But I have a hard time saying no to therapies. She needs all she can get.

Feeding Therapy

On Thursday she had her first feeding therapy session since late November. I don't think any of us expected much from her given that the past 9-10 weeks her jaw was wired shut. While she wouldn't let Allison do her mouth exercises - she did surprise us all by swallowing (willingly) about an ounce of thickened apple juice.

If I had been able to blog that night, I would have gone on and on about how great that was and how happy I was about it. And I am. I think. It's just a little complicated.

I'm starting to think that having a medically fragile child is sort of like being on drugs. There are these wonderful "highs" after what I think are huge milestones/achievements. And then after some time, the high goes away, reality sets in, and I crash. I guess that's when I realize that even though she swallowed an ounce, we have oh so incredibly far to go.

Plus, the highs seem to take so much energy. And when the reality of the situation sets in, I'm left feeling spent. And sad. And it probably didn't help that her feeding therapy was exactly one week after she coded. Emotions are weird.


School is going great. She is loving it. And her teacher called me on Thursday afternoon just to tell me that she is so pleased with how Harlie is doing. She said that she is transitioning beautifully. She said that everyone loves her. Including a little boy that is a very interested in her. She said that he used to be interested in the other little girl in his class, but now he only has eyes for Harlie. Typical male. Out with the old, in with the new. Boy, it starts young.

She also said that when they opened the door at the end of the day, Harlie "ran" down the hallway towards the bus. Running is a physical goal for Harlie. She more like speed walks than runs. Not really sure why. Probably has something to do with balance and strength. At any rate, giving her a motivation like the bus works for me!

And Brandy said that in the afternoons, when they drop off the last child before Harlie (Harlie is the last stop) she signs "mama" and "home." Awwww! She misses me!

At school, she has a speech therapist (ST) and a hard of hearing (HoH) teacher, in addition to her main teacher. The ST and HoH teacher come in during school hours (11am - 2pm) to work with her. Her HoH teacher started an "Experience Book" for Harlie. It is a book that goes back and forth to school each day. She writes what they worked on that day and what she wants me to work on that night. Then I write what we did that night.

I have to say that I think the book is pure genius.

1) it gives me something specific to focus on with her, which makes my life easier. Often, just finding direction is a major challenge.
2) it will help her learn how to "tell" me about what she did that day (I'm hoping anyway).
3) it will help me learn new signs and keep track of what signs she's learned

Tonight the HoH teacher wanted me to talk about a pig (and there was a pig glued to the page) and some words to associate with a pig - like big, dirty, roll (in the) mud. I did not know the sign for roll, so I looked it up and taught it to her. Ah, a productive night time routine. Gotta love that for multi-tasking!

Her Infection

Tomorrow we go back to Norfolk for her follow-up appointment with her Infectious Disease (ID) doc and her plastic surgeon. Of course one appointment is at 11am and the other is at 4pm. Fabulous. I tried to make them closer together - but ID only sees patients with PICC lines in the am and her plastic surgeon is in surgery all morning long till after 3pm. So, I did the best I could and got the last am appointment and the first pm appointment.

ID will check her "levels" to make sure that the antibiotics are doing the job of killing the infection. As of right now, we are supposed to go back to Norfolk once a week for six weeks. Since that takes all day, I might have them see if they can transfer her ID care to MCV. We'll just have to see what's involved to make that happen (and if there's an ID doc at MCV that will take her on).

I think I will also have them change her dressing while we're there. They have a VAT (vascular access team) that will come and do it for me. Jennifer (her PICU nurse) came and did it for me on Saturday, but that was a nightmare. Tom and I had to hold her down and Jennifer said that Harlie's the biggest fighter she's ever changed a dressing on (I've heard that before from other nurses, too). Which only makes things more dangerous as far as trying to keep the site clean, and trying to keep the line from coming out.

The worst is that changing the dressing shouldn't be that painful. The worst part is taking off the tape. After that's off, there's no pain involved. But, her anxiety is so bad. She gets so worked up and cries the whole time, which is not good for her circulation. So, her hands were blue the entire time we were doing it. I seriously thought she was going to pass out.

Luckily she seems to finally be getting used to the PICC line. At first she wouldn't let you near it. But now she understands that we have to wipe it with alcohol and hook up the meds and she's fine. And she will carry it around with her. I am going to take a picture of the meds so you can see. It's a pretty cool method for infusing meds.

But, for now I have to sign off. After all, it's going to be another busy day tomorrow!



Janis said...

I'm glad she is loving school so much. I get you on the emotional stuff I go from 'ah, this is no big deal' to 'let me pull my hair out' at least once a week. Hang in there mama!

Susan said...

Oh, boy can I relate. I've been tired too. (Although somebody has been waking us up an awful lot and that doesn't help.) We're in this for the long haul. We'd better pace ourselves Christy. (((((HUGS)))))