Monday, March 30, 2009

Music

The past few weeks I've started to notice Payton enjoying music. She's always liked music - but now, she asks to listen to music and absolutely enjoys it. And-I'm loving it! At church yesterday they had a bluegrass band that played and sang songs. Payton clapped, smiled, and sang to her hearts content. She doesn't really sing on key yet, but she's getting there!

This weekend we went to Payton's cousin's birthday party. Faith turns six in a couple of days and it was a Hannah Montana party. They ofcourse had music playing and Payton got to dance, jump around, etc. She LOVED it. There was a girl there who was about to turn three and Payton really enjoyed playing with her. I've noticed that Payton seems to really get along with children who are around three years of age - seems to be around her developmental level I guess? It seems her delays are between 18 month to two years, so it was nice to see Payton playing with her.

It was a three hour trip to get to Faith's house - and Payton did fairly well with the drive. However, she is suprisingly still TERRIFIED of windshield wipers. I used to try and schedule our trips around rain. As a matter of fact, if rain was in the forecast, we'd pretty much cancel our trip. She had started to do better with the windshield wipers, but for some reason this little fear popped back up (ofcourse, it's been a while since we've had a good rain!). That poor little girl screamed and shook (and ofcourse that terrified Koen), but we were able to stop and buy some Rain-X and fix the problem....although everyone's nerves in the car gets jostled pretty quickly when you have someone that scared. When we pulled into the driveway when we got home Payton said "Thank you daddy for not using the windshield wipers. No more windshield wipers." This is a HUGE step up for her. In the past, we would've traveled the entire way with screaming, shaking, and crying because she would not be able to get over the anxiety of the windshield wipers possibly being used. This time, she could comprehend that we bought the Rain-X and daddy would not have to use the wipers at all. Although it seems like a small step, it was HUGE for us. I'm so thankful for every improvement we see in receptive hearing!

Wednesday, March 25, 2009

Dosage Increase


I heard back from the nephrologist today and they are going to try another increase in Payton's BP med. Slowly but surely I'm sure we'll figure out the right dose for her. I know it is a path you all have walked before, it just makes me worry until we have everything figured out. Thanks for everyone's support and prayers. It really means a lot to me.



Tuesday, March 24, 2009


The school called today. Payton's been complaining of headaches. It's either her eyes hurt or her head hurts. I don't really know how to describe how I feel....helpless, tired, emotional, sad. They took her to the nurse and her bp was high. You know - if I could keep her with me every second of the day and shelter her and protect her, I would. Although I am at the point that I'm ready to make some more changes in our life for her. Right now, we're waiting until we feel exactly where God is leading us.

Bob had a car accident today. He was on the interstate. The truck looks awful and I feel so incredibly thankful that he's still with us! Shoot, he didn't even have to go to the hospital. His neck hurts, but that's about it. I'm sure tomorrow and the next day he'll be pretty sore. Honestly - I'm not sure how in the world I could juggle everything with Payton without him.

Here's some new pics of my little man - although he's not so little anymore! He's quickly catching up to Payton! :)



Monday, March 23, 2009

Friday, March 20, 2009

Stumped

Payton's blood pressure has me stumped. I know they said it would take a full two weeks before knowing whether the dosage increase has helped it go down, but it's still running around 125/75-really not far from the 135/80 they don't want it reaching. When I started having blood pressure problems, all they had to give me was a water pill and it worked wonders for me (I'm sure mine was just stress related though). I really never thought we'd have any trouble getting her blood pressure to go down....it has me stumped and makes me nervous.

Wednesday, March 18, 2009

Woohoo-sleep is back!

Last night Payton slept great. She hasn't slept but maybe a couple of hours a night since last Thursday. The whole train ride got her out of whack....but she did fantastic last night. And, I immediately notice a difference in my 'frame of mind' once I get some good sleep.

Yesterday, Payton went to the ENT. She positioned herself directly in front of the door as people walked in and managed to make herself the greeter. Anyone who walked in the door was greeted with a "Hello!" or "Hi, my name's Payton!" or of course "This is my mom!". Once we got back there, the nurse said to her "Payton, you do know you're my favorite, don't you?". She told her that the last time we were there and I'm always shocked at that. Payton can be a charmer, but usually at doctor appointments she screams bloody murder. However, at this office, she loves it cause all they have to do is look in her ears so she is relaxed and just happy to be there.

This morning she had to have three shots. She suprised me and did pretty well with those. Once they were done, my mom took her to her favorite place to eat (Denny's) and she rounded the morning off with her grilled cheese sandwich (which is what she would like to eat for every meal).

It's spring break week. The weather has been PERFECT and we got some sleep last night. Can't ask for more than that!

Monday, March 16, 2009

1st Train Ride

The kids had such a great time on Saturday. Payton did FANTASTIC. The only thing lost was sleep (if her routine changes or she is anxious, sleep is usually what is affected most). We're all still recovering from that, ofcourse, but the greatest thing was that her behavior wasn't affected. Generally in the past, her behavior becomes awful when her routine has changed or she is anxious. It was wonderful this time......and made us think we might try taking her to "Dora, Live" this summer. Not only does she love Dora - but my son does too......so I think they both would have a ball. Here's some pics from our little train ride. I think pretty much every one on the train 'had' to speak to Payton. She loved saying "Hi Conductor!" and insisted on showing everyone her ticket that got her on the train. She continues to make me come out of my shell :)

(Payton waving to a stranger :)



Thursday, March 12, 2009

Blood Pressure

Yesterday I got in touch with the nephrologist's nurse and they are increasing Payton's blood pressure meds to twice a day instead of just once a day. It was still running high (some times during the day, extremely high), so hopefully the extra dose will help keep it down. We should know in about two weeks how it's working for her. And, ofcourse, the lab at our hospital never got all of the results back to the nephrologist, so I called the hospital today and they should be faxing the results back to her doctor. I'm not really expecting anything from the bloodwork....I'm guessing it's just related to the narrowing.

This weekend we are taking the kids to Branson to ride the train. As awful as it sounds, we never go anywhere unless we are traveling to see family or going to the doctor. The anxiety it causes Payton has just not been worth it. Because the celexa has seemed to help her calm down, we are going to give it a shot. I am hoping and praying the trip goes well and that she is able to enjoy herself (I know Koen will) because if it goes anything like our last KY trip, I predict another few years before we try again :) I still have nightmares over that KY trip! I'll update when I get back to let you know how it went - with lots of pictures, I'm sure!

Wednesday, March 11, 2009

Kindergarten

Yesterday I registered Payton for kindergarten. She hasn't had her screening yet, but we meet with her pre-k teachers on the 25th for an exit conference. When I went to the office, I wasn't sure who I needed to talk to about the possibility of Payton having a para. I feel like she needs one, but wasn't sure what the school's response or thinking would be. They told me I would need to meet with the principal and discuss it with him, but come to find out after speaking with her preschool teacher, she has already recommended Payton have an aide. Can I tell you what a relief this is for me? Because we're just entering the school system, I wasn't sure if this was something I would have to fight for. Payton's preschool teacher had already met with the special ed dept in the elementary school and recommended Payton have an aide to help her stay on task (for instance, when it's story time or time to work on something, Payton just gets up and walks off....she just doesn't focus well or sit still well). Focusing is Payton's biggest problem and I firmly believe an aide will help her keep on track and can even explain things to her that the teacher says (directions, for instance) but Payton may not understand. Ofcourse I also think of the little things, such as using the restroom, carrying her tray in the lunchroom, etc. Whew - definitely an answer to prayer!

Tuesday, March 10, 2009

Happy '30' Bob!

Today is Bob's birthday. It's hard to put into words how I feel about this man. I'm sure it goes without saying anything at all, though. To a man who gives everything he has to everyone....his time, his energy, his love.....and never expects anything in return. And the most amazing father in the world. Happy 30th Birthday, Bob. We love you.

Thursday, March 5, 2009

Koen's Birthday











We love you, Koen! And as Payton would say, "Happy Birthday, Bubs!"

Monday, March 2, 2009

Just an Update

My nerves have settled down quite a bit after getting Payton on her BP medicine. She loves the taste of it (they flavored it tutti frutti) and always asks if she can take it. Ofcourse, since she still likes cat food it shouldn't suprise me that she enjoys the taste of almost anything. Her blood pressure is on an average around 122/72 and once she's been on the medication for two weeks, if it's still running this high, they'll go ahead and up the dosage to try and get it closer to the 90/50 range. This morning it was 124/100 so I didn't send her to preschool. It was very obvious (due to her yelling at me all thru the night in her sleep) that she was just 'off' and it was more than likely just because her routine was off that she was having trouble. After today, she should be just fine. I don't know if it was right to keep her from preschool....I guess I will live and learn as we go along.

This weekend we went to Springfield to celebrate Koen's 2nd birthday with Bob's family. I can't believe he's going to turn two this week. He has definitely hit the 'terrible' two stage - but in a different way than Payton. I don't know that Payton's ever was terrible two's...Nancy describes it best in her post today. For some reason, most of Payton's behavior I'm afraid will last even into adulthood. Koen's - I know he can learn from discpline. Koen just likes to climb things, run like crazy, and play 24/7. He is quite the monkey and seems to have that little boy 'destruction' in him. In the same breath, he LOVES to read and loves to be held and cuddled (on his timing, not ours!). He still takes my breath away and it has been such a joy watching him develop and grow. On my days off, I always find it amazing that while Payton is gone to preschool I can actually get some things done. I've never realized before how she requires my attention nearly 24/7, but with Koen, he goes off and plays and I can sweep the floors, clean the bathroom, etc. Don't get me wrong. It's not the same when she's not there, I just don't think I realized how much I can get done with a typical child.

This past weekend we were walking down the steps in the garage. Payton still doesn't trust herself on steps and likes to hold my hand. Usually, I'll hold Koen's hand and walk him down, and then grab Payton's hand to help her down. This time, Koen went ahead of me and decided to try by himself. This thrilled me....but unfortunately he landed smack on his head. (He always has a knot on one side of his head.....). Ofcourse, the next night he was staying with my mom while Bob and I went birthday shopping (Payton couldn't stand leaving her gma Wanda after the birthday party, so she stayed the night with her) and wouldn't you know, Bob and I got a call from my parents saying they were taking Koen to the emergency room. That silly little boy ran smack into the corner of a cabinet. He was fine....but as you can see from the picture below had one heck of a knot on his head.

Anyways, I just wanted to update on my kiddos and especially Payton's blood pressure. For the past couple of months, her color just really hadn't looked well and she really looks back to herself. Her eyes are not so purple/red around them - she looked like a raccoon for almost two months and I just couldn't figure it out. She looks healthy again and seems to be feeling a lot better. I can't imagine how good she'll feel when we get the blood pressure to the 90/50.