Nerves

I've been kind of nervous the past few days because of Payton's BP. I'm supposed to take her in for lab work today and start the blood pressure medicine this evening. I asked the nurse when I should start to worry and call them and they said any time her reading is above 130/85. Unfortunately when the sitter called today her blood pressure was 132/104. The sitter said when she sat Payton in the chair, her eyes just looked kind of glazed over and she kept repeating the same thing over and over and over in a quiet voice (which Payton doesn't do - usually when she's saying something over and over she talks LOUD and it's because she's excited). Anyways, the sitter said that kind of bothered her and when she got the first reading it was 132/104. She was hoping it was wrong, so took it on the other arm and sure enough it was that high. The nurse said when she's on the medicine they would like to see it in the 90/50 range, so I'm hopeful that's right where she'll be. Unfortunately, we don't have a pharmacy in town who has the medicine, so we have to travel about 45 minutes to get it. But, if it makes her feel better, it's worth it!

About three weeks ago I had been concerned about Payton. It was my Friday off and Payton had an AWFUL day. My mom stopped by to help me out for an hour (it had been a long time since Payton had been so 'abusive' but that day I needed help and am never afraid to call my mom or sisters for help (and if my mother in law lived closer, I'd feel comfortable enough to call her too). Thankfully, I've been blessed with some women in my life who have really been there for me when I needed them! :) Anyways, I thought at that point it could possibly be blood pressure, but wasn't sure. My mom offered to keep Payton that night and I almost hesitated because I felt it was to the point she was almost acting like it was high enough she could have a stroke (I was extremely nervous but didn't share it with anyone except Bob cause I always have a fear someone will think I'm a looney). The past few weeks haven't been nearly as bad as what that one week/weekend was, but it still makes me feel bad for her....and ofcourse thankful nothing serious happened.

For now, I'm so incredibly thankful Payton succeeded in letting us take her blood pressure....and also very thankful we all live in a time where they have medicine that can help. I know many people would say "it's just blood pressure" but is it okay to feel so sad over this? I'm pretty emotional over it and ready for the weekend.

She keeps on impressing me!

Well, this morning Payton wanted to take her blood pressure with the automatic machine. She calls it the "white one". The cuff for the manual one is black and the automatic one is white. Ofcourse lately she's been saying she wants a red one. Can you tell she's obsessed with it now? The other evening she wouldn't go outside and play unless she got to take the cuff out with her. She cracks me up. Actually, it's amazing to me. Two weeks ago she would go crazy anytime she saw the cuff - now, she welcomes it. She doesn't get worked up at all and just sits there patiently. This morning when she woke up it was 137/77. Looking at the BP chart for her age, weight, height it should be around 91/52. And, we've managed to be blessed with a babysitter who used to be a nurse's aid and can take Payton's blood pressure at different times during the day so we can give her doctor an idea what it's doing throughout the day.

What can I say? I'm proud of our little girl for being able to relax and have her blood pressure taken calmly.

Payton got her Denny's

Payton's favorite place in the world to eat is Denny's. I'm not real sure why, she always just gets her grilled cheese sandwich and fruit, but that's where she always wants to go. We made a promise to her that if she let us take her blood pressure, we'd take her to Denny's, but until then....no Denny's. Well, she finally let us take it (with the manual one, ofcourse. The automatic one scares her to death). It is elevated (which is what my gut has told me for about a month or so because of her headaches, her irritability, tiredness, and even complaining of her eyes hurting). I called Noel (my expert) and talked to her for a bit.....and will just go ahead and call her cardiologist tomorrow. The good news is that her kidneys looked great!

Sunday, I took Payton skating. I was exhausted by the time we left, but she had a great time. I dont' know how many times I picked her up off the floot(she held onto the wall and to my hand) but she loved every second of it. And she has bruises all over her legs and bottom to prove it! Her cousins Laney, Ellie and Brianna went too - so Payton thought it was the best party ever. I'll try and post some pictures of it soon.

On a side note, we really feel like we can see a difference in Koen after taking him off of the milk. He's eating better (which you could never really tell he didn't eat well cause he's just a little butterball) and he is just 'himself'. He's talking more, seems to be hearing more, and sleeping really well. Silly me had no idea a milk allergy could cause ear infections. Hopefully this will take care of them for good. The other evening I was at my folk's house and he was off in the playroom by himself. Wouldn't you know, we found him standing on top of the dresser. Ofcourse, part of me had to be proud of him because Payton still would not be able to figure out (problem-solve) how to get up there and even if she could, heights are really not her thing. So, as the outside of me was scolding him about climbing up there, the inside of me was saying "nice job Koen!".

Payton to KC

I just got a call from Bob....Payton had her test this morning on her kidneys (which I'm sure all is fine because they didn't have to go see the doc immediately after). They had to leave at 5:30 this morning, so we assumed she would sleep the whole way and it would be a peaceful drive. What were we thinking?! He said he put her in the car and she looked at him and said "GREAT JOB being quiet daddy!" That's pretty much our little girl....she bounced right up ready to go :)

Yesterday I called Koen's ENT because he had another ear infection and she said they had the results back on his allergy. He's allergic to milk! Never would've guessed that. But, glad we now know and can keep him off of milk. Which, after Payton's hypercalcemia, it should be an easy adjustment for us. I'm just glad to know why he kept getting the silly ear infections.

This past weekend Payton and I took a trip to Harrisonville to visit Abi and Noel. We had such a great time! I've got some pictures I'll post later - they really are two peas in a pod. And, I'm also very envious because I saw Abi's ABA therapy book and I really wish I could find a behavior therapist to do that well with Payton. We recently tried the weighted blanket (Payton's been having some absolutely awful days) but she hated the weighted blanket. We'll just keep trying different things.....for now, a blanket heated in the dryer and then wrapped tightly around her seems to be doing really well. You can almost see her face instantly relax. But I am so thankful I got to spend the day with Noel. I swear she is like a breath of fresh air :)

Beautiful Post by Louie's Mom

Click here

Nephrology

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.