Yesterday was Payton's appointment with nephrology. Just thinking about it makes me get tensed up. Just the sight of a blood pressure cuff scares her to death. I really don't think it's the noise - manual or electronic. She's in the room when I take mine or even when I've taken Koen's to show her it doesn't hurt. Anyways, to make a long story short they were unable to get a BP on her. They've never gotten a BP on her. I've never been concerned about it before, but the past three weeks have been awful. She's been complaining of headaches, she's actually been sleeping (even going to bed at 7pm), and she has been a mess. Crying, temperamental, explosive, etc. Bob mentioned last night that it feels like we've gone backwards about a year (before we started the celexa). I've upped the dosage to see if she had grown enough that we needed an increase, but it didn't change a thing. It's not that you 'forget' what it's like when your life is so stressful dealing with a child who is so extremely explosive, angry, and abusive....I guess you just push it as far back in your mind as possible. Well, here we are again, and it feels just plain awful.
Next Tuesday she goes back to KC to have an ultrasound done on her kidneys, check her renal arteries, etc. She'll fight it, but she'll do okay - they'll atleast be able to get it done. They told me to try to take her BP while she's asleep - but I don't know that they understand the sensory issues she has with the cuff being around her arm or leg (she doesn't really like bracelets or anything around her wrists, you can always tell it really bothers her). Payton really caught the nurses and the doctor off guard by how upset and agitated she was. And, the trip on the way home was ofcourse full of hits, yells, aggravation. Which, is another concern of mine. How in the world do I teach my two year old son that this behavior he is seeing from his sister is not appropriate and is not acceptable from him? He sees Payton getting in trouble for it - but when she's aggressive, he becomes a different little guy too. I don't want my house to feel that way - for my family or for guests. I'm starting to feel 'stuck' again and I don't want it to be like this. I'd love it if the docs were able to give us some answers (if it is her BP giving her problems) but for now, if she won't cooperate, it's hard to know. I really really just want to see her back to the way she was a few months ago.
5 comments:
Hey, we all have ups and downs. Hopefully she pulls out of the funk soon.
I hope it isn't her BP, and just a phase instead.
Thinking of you.
I hope things don't go backwards for you guys. I have been so relieved for you since things have gotten better. Noah HATES his blood pressure being taken. We haven't got an accurate one either. It actually scares me to not know what his BP is. It is just so sad. He gets red from head to toe and shakes all over. I wish they would try it manually. I think it is the noise of the machine since that is where his issues lie. Does Koen go to daycare? I was just thinking that as soon as he is old enough you may want to put him in a preschool class or something. There are some special needs kids in our class and the "typical" kids realize these behaviors are not appropriate. Unfortunately they do treat them different. My point is putting him around typical kids may show him that these behaviors are not something he should not display. Remember he does have the ability to control it unlike our kids. Hugs.
Are we still on for this Sat? I think we both could use it! I will totally drive to you, that way I get out of being here!!
You bet we are!!! I told Bob I was coming your way to save you thr trip, but would love to have you in Lamar! I think it's supposed to be warm - the kids may be able to play outside :)
I think it must be incredibly difficult sometimes. I think also you are being forced to search deep within your soul for sources of strength you never knew you had. And you are finding them. May God be with you and bless you on your journey. Remember He never lets go. Don't you either.
Kay
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