Pics

I'm out of town on a business trip this week and Bob just sent me these pics of the kids. Man, I miss them so much!!! Only a day and a half more and I'm back home with them....I can NOT wait. Bob said the kids seem to be doing just fine with me being gone - and Payton is getting to spend the night at my mom's (there's no way Bob could take care of both at night....because if Payton gets up, one of us usually needs to be with Koen because Payton screams loud enough it scares Koen to death). So, I think at bedtime Payton is enjoying some time with grandma and Koen is enjoying some one on one with Daddy.

Koen has an appointment with the ENT on Thursday. His ear has been draining and he's running a fever thru the night. I'm guessing we'll need to get that tube put back in. Easy little surgery, though, so I definitely will not complain.

I've not been home to take Payton's BP and haven't asked Bob about it - so I wouldn't worry about it while I was gone....so far it doesn't look like the increase has done much for her. Sadly, my BP is lower than Payton's. She goes back to KC the middle of May, so it will be nice to see the doc face to face instead of trying to talk over the phone.

That's all that is going on here! Last weekend we went to my nephew's ball tournament (which he got 1st place!) and had a great time. Payton pretty much greeted everyone there, smacked some strangers on the butt (yeah, that was great), and made herself at home. She had a blast! Koen enjoyed it too - he loves anything that has a 'ball' in it....I have a feeling he will look up to Tanner. I'm so excited for the weather to stay warm so the kids can be outside.....the evenings go so much smoother when we can get outside!

Tough Times

I'm not sure why, but Bob and I both have been having a really difficult time lately. There's so many things we're struggling with lately. One big issue is how in the world to teach our two year old son that because he sees Payton behaving a certain way does not mean it's the correct way to act or react. I know everyone says to raise your special needs child the same as you would your typical child. I get that. The problem is, Payton has absolutley no self control.

Last night we took Payton to her first t-ball practice. Bob and I were both excited and even Payton was excited. The ball field she practiced on is pretty much right next to the train tracks. Payton is obsessed with trains, but when it's that close, the noise can be way too much for her. The first train came by and Bob was out on the field with her and was able to grab her and cover her ears, so that went ok. I get tickled at Payton because she has no focus, so it is very typical of her to just wander off and do her own thing. I expected that, and she did wander, but Bob was able to redirect her back to the field. For a good ten minutes (quite an accomplishment in our world!). After that ten minutes, Payton ran over to me and decided she was going to go play in the park (she was using the excuse of needing to go potty, but because she still doesn't quite know how to cover her tracks she blurted out she wanted to go play in the park). I explained to her that we were here to play t-ball and she would not be going to the park. So, she stiffens her arms down and screams at the top of her lungs. Embarassing, of course, but even much more so when my two year old son decides he will mimic her and return the scream and stiffen himself. He wants to be just like Payton (what little brother doesn't?) but that is unfortunately bringing a lot of bad behavior from him. He sees her meltdowns, feels the stress in the home, I feel sad for him having to see/feel all of this. I know when he's older I will be able to explain more of this to him, but for now, he see it and thinks it is okay to follow exactly what she is doing.

I ended up taking Koen home and leaving Bob to try and keep Payton focused. I guess in the next five minutes another train came by and Bob said that topped her off and she was in complete meltdown mode. He explained to the coach's wife that she had williams syndrome and that we would try one more practice and see how it goes but that these meltdowns are really not unusual for her. The coach's wife was extremely nice about it, but I feel once again sad over this. I think I get my hopes up thinking this is going to be an opportunity for us to be able to get involved, meet other parents, etc and the fact is it's just not going to happen this way. We feel alienated again. I'm sure this seems so selfish, but I just want to see her able to make friends, able to cope, able to control herself, and able to participate in things.

At work I hear my co-workers talking about taking their family places, going out to eat, taking their kids to movies, etc and I want that so badly for my family. Payton is getting better, but it is still hard to go places because we have to wonder any time we take her if she's going to melt down....and once she hits it, you can't pull her out (as you all know). Is it ok if Payton doesn't play t-ball? Absolutely. But it still feels like it's just another time that we've tried something, had our hopes up, and are again just stuck at home.

I don't know why Bob and I are having such a tough time right now - it may be the mix of frustration over her behavior and that we're still struggling getting her blood pressure under control (yesterday it was 140/80)....but for some reason, we're having trouble coping. The doctor yesterday did increase her anxiety medicine and in the next week we'll look at increasing her blood pressure medicine again. I think we want people to tell us this is going to get easier, but I am guessing it's just different milestones/experiences that you miss as they get older that really bring you to your knees?

Private

I decided to go ahead and make my blog private.....if you know of any one that reads the blog that would like to have permisson and I somehow missed sending them an email, let me know!

Just a quick update

Things have been kind of a blur around here lately - neither of the kids have been sleeping well and it was getting to the point Bob and I weren't sure what to do with Koen. We KNOW he can sleep, but he's been getting up around every 30 -45 minutes. So, off to the doctor we went. Double ear infection - with one of his tubes still in his ear, but dislodged and not doing any good. We should've known, because like I said, he can sleep good if he feels good. So - not sure if he'll have to have that little procedure done again. We're waiting to see if he starts up his frequent ear infections again and if so, we'll get the tube fixed. Suprisingly, Payton ended up with an ear infection too (it'd been a while since she had one), but her tubes were still in place and the antibiotic cleared it right up.

We're still messing with Payton's blood pressure trying to get the right dosage. Yesterday was a very good day for her and it was encouraging to think we may have just hit the right dose. We'll see how the next two weeks go and then we'll know for sure.

The kids had a really good Easter. Payton and I had to sit outside of the church service because it was so loud, but Bob really enjoyed it. Payton is still enjoying hiding easter eggs and going on egg hunts. Koen picked up on it really fast about finding those eggs. Payton's also started enjoying playing UNO. We don't follow the game exactly, but I figure it's good for her with the colors and numbers and trying to follow directions. She's picked up on it really well and loves it when all of her cards are gone and she wins!

Tomorrow I take Payton to KC to the doctor. I'm looking forward to getting some extra time with her, even if it is going to the doctor. I really can't put into words how completely different Payton is when her blood pressure is in the normal range (typically in the morning). As Bob says, she's just a princess.

Here's some pics:

Correlation

One thing is for sure, Bob and I have noticed a direct correlation between Payton's blood pressure and her behavior. When her blood pressure is lower she is definitely a calm little girl. This tends to be in the morning after she's taken her first dose of bp meds. Sure enough when her blood pressure goes up, she becomes angry and almost monstrous.

It feels fantastic to know and feel why all along she has been such a temperamental little girl. I've always tried to be patient with her, feeling that so much of her behavior issues were anxiety (and I still believe a lot of it was) but to add the blood pressure on top of it really created a lot of problems for her behavior wise. Even Bob said he looks at her behavior and outbursts different now because he knows it's her blood pressure. I'm just guessing here, but I imagine the celexa probably brought her blood pressure down some when she started it because it relieved her anxiety.

One thing I am struggling with is knowing that she more than likely has had high blood pressure since birth. Because of her sensory issues and nonstop crying, we were never able to get a reading on her. Her heart has had to work harder because of the high blood pressure and caused her to have an enlarged heart. It breaks our hearts to know that she really wasn't feeling well and we just didn't know it. Payton's gone to bed the past two nights at 7:30 and is just exhausted. She has been complaining of headaches and grabbing her head screaming, which still terrifies me. Tomorrow I call the doctor again to talk about increasing it again to see if we can get it down some. It's still running about 127/81 for now. It will seem really strange if we get it to the 90/50 range!