Thursday, July 31, 2008

This week my sitter is on vacation so we've been taking turns being off with the kids. It's been a trying week for Payton - her routine is different - but she absolutely loves being at home all day. She has been extremely emotional and aggressive, but in between those times she amazes me. For instance at lunch today our conversation went like this:

Payton: Mommy, you're my friend.
Me: Payton, you're my friend, too.
Payton: Mommy, you just melt my heart.

Oh, if she only knew what she did to my heart. Her smile melts my heart. Actually, everything about her melts my heart. However, watching her aggression, anxiety, and emotion brings me to my knees. My sister was at the house yesterday when Payton lost it. She called me later and was saying how she couldn't stop thinking about Koen. How sad it is that right now he is too young to understand that Payton struggles in areas (when she gets emotional and angry, she screams at the top of her lungs and unfortunately unleashes terror on him and me - or anyone within arm's length). Anyways, she said some day he will know how much she loves him. And, he will. I feel so blessed to have a little boy like Koen. The road has been completely different with him and it's wonderful getting to experience it. I don't think I could ever kiss those chubby little cheeks enough.

Tuesday, July 22, 2008

Hmmmmm.....

When Payton was diagnosed with ws, everything we read spoke of how happy these individuals are. They have a cocktail party personality, are happy all the time, etc. At the time, we were still dealing with an extremely fussy child and it thrilled us to know in the near future our daughter would change from being nonstop fussy to being nonstop happy. I cringe now thinking about how silly Bob and I were to actually believe that. I thought I would start trying to prepare Payton for our move. She's known for hating change, so why not give her notice? Dumb mistake. I told her on Sunday and she has basically been an emotional wreck since.....for the exact opposite reason than what I expected. She wants to see her new house NOW. When I picked her up from Dawn's yesterday the first words out of her mouth was "You get boxes?". I know it's anxiety - in her own way she is nervous about it. And, honestly, Bob and I cannot believe how much this girl can OBSESS about things. It's almost easier not to tell her anything. She almost can't enjoy herself anywhere because she's too worried about what's coming up next. And I have no idea where that girl gets her energy. She can scream for hours about wanting to see her new house NOW and yet still be up til midnight. I'm now at the point of wanting to see how siblings cope with all of this. Right now, Koen just stares at her like "what the heck is your problem" but I know as he gets older he's going to get just as frustrated as Bob and I. I've seen and read what having a child with a disability can do to families and part of me feels like my head is spinning trying to make sure we're sticking together.

When Payton attended the learning center, the coordinator always said "Better to medicate the parents than medicate the child". I listened to this for a long time, but have since realized it's not the case. I don't think medicating Bob and I would make Payton feel better at all - she's miserable. The dev pediatrician recommended xanax or zoloft. If any of you have any experience with these medications with your child, let me know. (The medication he gave her to try first is addictive and can only be used once a month for a three day period - she needs something daily).

I've talked Bob into going to the alumni baseball game this weekend and he's going to take Koen with him. I'm hoping Koen and his gma Wanda can have some one-on-one time. Bob's going to head to West Plains Friday afternoon so he and his dad can build a computer together (Bob loves doing stuff like that) and then hopefully just relax and have a good time. My heart aches for Bob. For the past month he has been a completely different person - I think all the emotions, obsessions, stress from Payton have finally taken it's toll on him. I'm so glad he's willing to get away for the weekend.

Monday, July 21, 2008

Convention

This year the WSA convention was in CA. Bob and I wanted to go, but didn't feel that Payton was ready to make that trip yet (and after the past two weekends we've had, we KNOW she wasn't ready yet). Nancy and Laura were able to make the trip and they posted about it on their blogs. Their pictures and posts made me feel like I was there. I'm so glad they were able to go and share their experience with us.

Payton had her eye exam on Saturday. She obviously cried most of the time, but I can't imagine how big that equipment looks to any child. I got tickled because they were having her answer questions on cards, such as "What number is the arrow pointing to?" or "How many circles are there?" and her answer was always....."EIGHT!" I finally just told the lady that no matter how many times you ask her, she will answer the number eight. The lady just looked at me funny, but it's true :) They weren't able to use any of the equipment with Payton, but they got enough information to know that she didn't need glasses and her eyes were just fine. Yeah! Friday we go to the dentist and I'm guessing I won't get as good of news from him. But, nice thing is, it's her baby teeth and she will lose them. Hopefully brushing her teeth will be going a lot smoother by the time she starts losing her baby teeth and getting her permanent teeth in.

This weekend I'm going to do my best and push Bob out the door to go back to his home town and play in an alumni baseball game and just spend some time with his brothers. He really needs to just get away and have some time to himself. He usually deals with things ten thousand times better than I do, but for some reason he is really having a hard time right now. Hopefully I can get him to just get away for the weekend and have some time to himself.

Tuesday, July 15, 2008

Emotions

There's really not any way to describe our weekend other than E-MO-TIO-NAL. Whew! I really can't say much because the past few weeks have gone very very well for Payton, but wowzers, something snapped and she has fallen to pieces. I was home with the kids yesterday and was hoping to see a difference in her, but not yet. We are definitely going to keep it low-key this week. Koen and I both have huge bite marks from the battle yesterday - and man that hurts. It had been a long time since she'd bit me and hopefully it was the last. After church on Sunday, we had gone to my mom's (like usual) and when it was time to say goodbye Payton was banging on the car window and screaming. I really feel like she believes once she says goodbye, it's forever. I wish I knew how to make her realize she will see them again. She basically left everyone at mom's house in tears because they couldn't believe what an awful time she was having just leaving in the car. I guess that's how much she loves everyone. Her emotions run deep for people. If only everyone in the world had that much love in them.

Ofcourse after an emotional weekend for Payton, Bob and I are both feeling run down and emotional. There are still days where I wonder what life would be like if everything would've been okay with Payton. What would my marriage be like? How many children would we have had? What trips would we have taken? What activities would we go to? None of that really matters, but I do sometimes wonder......just because everything changed. In the end, we're stronger, but I think I will always 'wish' for Payton-and our family-for her to be made whole. It sure is a lot of heartache watching your child struggle. At times things feel like their getting better and then we hit a bump like we did this weekend and it's hard to get out of bed in the morning.

We did get good news this weekend. We've had a family looking at our house to buy and we are getting ready to sign the contract and trade houses with them. For now, it was just too much to take care of. We are looking forward to downsizing and simplifying things. Bob is looking forward to having a much smaller yard to take care of :) They're wanting to get moved in before school starts, so in mid-August we'll probably be moving. We all know how much Payton loves to go through things. Something tells me that every box I pack will get unpacked atleast twice before the move.....guess we'll be buying lots of tape! :)

Tuesday, July 8, 2008

Payton's Favorite Number



As I've told you before, Payton LOVES the number eight.....anytime you count, it's always to number eight. She has to turn the pages in the book to find page eight and she gets ecstatic! As luck would have it, the number of the day on Sesame Street just happened to be eight and it absolutely made Payton's day. I heard her screaming and I thought something had upset her - I never dreamed all the yells were over the number eight :) I swear, I love this little girl.

Monday, July 7, 2008

Developmental Pediatrician

Thursday we ventured to KC to take Payton to the developmental pediatrician. This was our first visit with this doctor (Noel referred us to him) and he was wonderful. He spent two hours with Payton, just observing her, going over her records, and asking questions. I felt very comfortable with him-and ofcourse Payton did too. Nothing was off limits with him and he basically wanted us to just let Payton be. Instead of me reprimanding her for getting into his drawers, papers, etc - he did his best to just watch what she would do in the environment. His synopsis: very impulsive, adhd, and anxiety. As her mom, I knew she was impulsive and anxious - but was unsure of the adhd. While we were eating at Hardee's before the appointment I told my mom that I was assuming she was adhd because she couldn't even sit still to eat - anyone that walked in, walked by, any amount of food on the floor, etc. distracted her way too easily. And, I remember when she was younger her therapists thought she was having petit mal seizures because she would just stare off in space (I always thought she took herself out of the situation when things became too difficult) but I guess even then it was adhd.

Dr. Hoffman went over the medication options with us and my stomach still felt ill regarding any medications for her. I explained that I want to see her deal with situations better and be more capable of handling situations but yet part of me still felt sick about giving her medication for it. So, he thought starting out he would give us a prescription for an anxiety drug that she can take for atleast three days in a row (only once a month) when we know she will be in a situation that will cause her extreme anxiety. My mom had mentioned to the doctor that Bob's family lived about three hours away and it's been way too much for Payton to handle the trip because of the anxiety of traveling (driving next to semis, the sound of koen crying, being out of routine,etc). He said this would be a perfect example of when to give Payton the medicine. He said if we like what we see while she's on the medicine, he would try her on zoloft or xanax. Ofcourse, the side effect of these meds is the adhd getting worse and I would hate to see that happen. Because she's not in school yet (and will only be going to preschool for half a day) I feel like this is the right direction to take for Payton right now. It's also easier for us because she is our oldest and we aren't meeting ourselves coming and going with any sibling activities yet. We generally stay home and it seems to suit her very well. Obviously when she starts school things may change. He wants to see her in April of next year before school and will be in contact with us over the phone to make sure any medication she's on is fitting her needs.


As far as sleep is concerned, I explained that we gave her melatonin and that it helps her calm down to go to sleep but she doesn't stay asleep - many times waking up and screaming for a couple of hours straight. He wondered if she was possibly not on enough prevacid, so he increased her prevacid to see if that would help any. Then, he called us back at 9pm on Thursday evening and also told us to increase the amount of melatonin she was taking - saying that most ws individuals have sleeping issues because their brains do not produce enough melatonin (I hadn't been told that before??). My husband is crazy about this doctor because he took the time to call us of an evening.


For now, we are just going to do fish oil for the adhd. Again, because she is not in school full time yet, I felt I had time to wait on this. I hope I don't regret any of my decisions - and the fact is, I guess I can change my decision at any time and the doctor said he would run with it. His goal for Payton was the same as ours - to see her happy - along with the ability to focus. He did recommend her seeing a special needs psychologist because of her aggression. I explained that her aggression usually does not reach past family - it's always with the people she's around most. But he said eventually this could move on to her teachers, therapists, and friends and before that happens he would just like to get the psychologists point of view to make sure we've covered everything. The fact is, he said it would be hard for her to make friends as it is, but if she's aggressive and voilent with others, they simply won't have anything to do with her at all. And - that's the last thing I want for her.


My favorite comment the doctor made: "Well, she obviously has adhd....I mean, look at my room, it's demolished!" I started laughing and I think he almost thought he hurt my feelings because he started apologizing and I just explained that I completely agree with his comment. That's what she does to my house. I leave the room for two seconds and come back to paper scattered and torn, picture frames broken, cd's everywhere, etc. It's easier for me to leave Koen alone in a room than Payton :) I just get tickled because if I give Payton a piece of paper and a pen to write with she will tear the paper in pieces and take the pen apart - usually breaking it. Give the same things to Koen and he really does try to scribble. Anyways, the doctor visit was great - and even though it wasn't a 'fun' trip I really enjoyed the extra time with my mom.

Here's a couple of pics from the 4th......the slip n slide was a hit with the kids.


Tuesday, July 1, 2008

Already July?

Last week we decided to try Payton in swimming lessons. She loves the water this year - puts her floaties on and is one happy little camper. I put her in private swimming lessons thinking they would more than likely have to modify things a bit for her, but in the end it didn't work out anyways. Two different teachers tried working with her and she was bound and determined to throw a fit instead of even putting one foot in the water. As we left, the teachers said "see you next summer!". So, we'll give it a go again next summer. More than anything, I'm just happy to see her out in the water this year. Koen is still content on running around the pool throwing rocks, shoes, grass - anything he can find - in the pool. Bob and I have so much fun just sitting back and watching him. He is all boy and loves getting into anything and everything. The other evening, Koen was pulling things out of my cabinets and I overheard Payton say "can I play with you, Koen?" That was the first time I've heard her say something like that, so it was music to my ears (and pulling things out of cabinets would be right down her alley!).

This month is full of appointments for Payton. In a couple of days we head to Kansas City for the developmental pediatrician. I'm very excited to meet this doctor - and anxious to see what all he does for Payton. My mom will be making the trip with me and I'm excited to get to spend the extra time with her (and ofcourse, Payton will love that as well). She also gets her eyes checked and gets to go to her first dentist appointment. I have been putting the dental appt off because I still pretty much have to lay on top of her to brush her teeth (I know it's just sensory) so I'm guessing she will not be a happy camper. But - she may shock me to pieces and do just fine.

So far, the summer is going way too fast. I can't believe it's already July. We've never been much on fireworks since we've had Payton - obviously she hates the noise of them-but we still plan on getting together with friends and family.....Payton will be thrilled cause she'll get to eat some watermelon (that girl can eat a whole watermelon by herself if we let her!). Payton is still saying things that about blow us out of the water. For instance, the other day she went to her Aunt Sara's house and she said to Sara, "Great job getting us home, Sara!". Then when she was in the car with her other aunt, she said "Great job driving, Shawna!". She's quite the encourager. This evening she was helping me change the clothes from the washer to the dryer and she said "Thank you soooooo much for sharing". I realize some day she won't enjoy helping me with the laundry - but for now she loves it. I couldn't believe she thanked me for sharing the chores with her. Her new favorite sentence is "You're sooooo pretty" or "You're sooooo beautiful". That gets everyone wrapped around her finger pretty quickly - and I think she has that figured out :) Even though she already had me wrapped around her finger, she has me wrapped a little tighter now!