Monthly Archives: December 2009

Note to self about Christmas next year

As Baylee matures, she has more and more anxiety issues. She hates interruption of routine and when things change her anxiety gets the best of her. She worries when people in her life are absent….such as a teacher, aide or bus driver. She worries when people appear to be injured. She gets anxious and her behaviors escalate when people visit (especially grandma & grandpa!). This year I was enjoying the fact that Baylee, at age 13, still believes in Santa and she was excited for his visit to her house. She seems to have some concept that Santa brings her stuff. On Christmas Eve I told her that tonight was the night Santa was visiting. Big mistake. She immediately starting getting anxious about it and it got her all out of sorts. She did not sleep one wink on Christmas Eve! She was up ALL night. She mostly wandered the house, stood by our bed, and watched TV but did some of her screaming that she does when she gets anxious. I think it’s her way of venting her nervous energy and it sounds hideous. We affectionately call her the Banshee Woman when she does her screaming. Needless to say only the teenager in our basement got much sleep that night. Thankfully with the windows shut, our neighbors did not hear any 2 am blood curdling screams. We probably would have had the police at our door.

By 11 am Christmas morning, Baylee fell asleep in a chair and didn’t get up until late afternoon. With Baylee asleep during the day our house was quite peaceful yesterday!

Note to self for next Christmas–don’t tell Baylee tonight is the night Santa comes! She can wake up and be surprised. We’ll all be better rested.

Happy New Year everyone!

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Merry Christmas!

Hello all! Merry Christmas!

I have sadly neglected our blog for a very long time, but I assure you our adventures with Baylee have continued without interruption! Thank you to all who have sent snail mail Christmas cards, photos and newsletters! I cherish them all and love getting them in the mail. Unfortunately, time got away from me this year as it has in the past few years and my Christmas card will have to be this blog post.

2009 was good to us! It was a year of work and more work, but we are very fortunate in this economy to have the opportunity to work. I never, never complain about being overworked anymore.

Baylee is doing well, but her behavior is always a challenge. She has thankfully been very healthy and continues to make progress. She is in 8th grade and has a great team working with her at school. After 5 years on a waiting list for services that we were told was 10 years long, we got the phone call in September we really didn’t expect for another 5 years. Baylee will begin to get services (an in home caregiver) starting in a few weeks. We are starting out slow with just Saturday morning help, but will go from there and slowly build in more hours as she gets to know her new caregivers. We hope that in the next 3-5 years that we’ll be able to transition her to a group home. I think much of her behavior stems from boredom, and the extra services will keep her busy with numerous activities and they are also required to work on living skills with her, so I expect we will see much growth in her in the next few years. It’s very exciting….for her and for us. In the meantime Baylee continues to keep us on our toes. She customized our ceiling the this week by pouring water all over the sink counter top in our upstairs bathroom. As we were watching TV it began to “rain” in our dining room! At first, we could not figure out where it was coming from until we realized the sink top was wet. The water just ran down the wall slowly, into the baseboard and then pooled on the ceiling above our dining room until it burst through. The fun never ends! Neither one of the boys will admit to who left their bathroom door unlocked, incidentally. Baylee continues to enjoy playing outside (when the weather is nice, she’s a fair weather person), eating and playing with her “babies” (stuffed rabbits and dolls). She still believes in Santa is obsessing over his visit tonight. She calls Santa the “Ho, ho, ho”. Santa is bringing her her yearly iPod (hopefully it will last longer than last years iPod!), a new baby doll and some Aeropostale clothes. She is 13, and like a typical 13 year-old she loves new clothes. I love those glimpses of normalcy with Baylee!

Lukas is 17 now, and a senior in high school. His plans are to attend the University of Nebraska next year so will be staying in town, and probably living at home since his help with Baylee is often needed. He’s thinking about pre-pharmacy, radiology or perhaps some sort of engineering. He’s still involved in band and plans to try out for the Pride of Nebraska Marching Band this summer. It’s very competitive to get in and very few make it, so keep your fingers crossed for him. He is working at Hy-Vee and when our new store opened in October of 2008, he transferred to the new store and works for Dave. He works a lot of hours and keeps very busy. Unfortunately, he wrecked our trusty van of 15 years the other day. His car was in the shop so we let him drive the van and as many 17 year-olds do (present company included), he made an error in judgment. Thankfully no one was hurt! We signed the van over to the junk yard today. (RIP trusty Ford….we had many memorable travels in you.) Unfortunately, the news on his car was not good either. The transmission is fried, so we are junking that as well. Down two cars in one weekend! We found a wonderful used car from a friend who had just purchased a new car, so guess what Lukas is getting for Christmas? A 2000 Dodge Intrepid. The car is absolutely immaculate, so he is thrilled to finally get his wheels back.

Colton is doing great. He’s in 7th grade now. He was on the Cross Country team and is proving to be a talented runner (my next TeamCdLS recruit!). He also plays the trumpet in band and loves to play video games. He’d do that all day if we let him. We finally had to extract his reimplanted front tooth that he lost in a bike accident a few years ago. They sawed off what remained of the root and attached it to his braces. He thinks it’s pretty cool that he can spin it around on the brace (ewwww), but he’s broke it off the braces at least twice now and he hates looking like a hillbilly when he has to wait to get into the orthodontist to have it put back on. When he’s fully grown he will be able to get an implant, so for now he has to deal with the inconvenience and the gross out factor. Next month he has oral surgery to expose an impacted tooth that is high up in his gum and laying sideways. He can’t get a break in the teeth department! He’s having a lot of anxiety about the surgery, and I don’t blame him, though it is a really minor procedure. I don’t think he’ll ever have any affection for dentists. I told him if he makes it through the procedure bravely, we’ll go to the Sprint store afterwards and get him a new phone since his contract is up. Hopefully that bribe will take care of the dramatics and anxiety we endure with most dental procedures with him!

As for me, after working a day job and a night job since October ’08, I decided to give up my school job this fall and work for Dave at Hy-Vee only. I like just having one job now. I think I’m starting to get my life back and never realized how exhausted I was all that time, but you do what you have to do. I continue to sub at the school now and then. It works out well because Dave writes our schedules which ensures that either Dave, Lukas or I am home with Baylee when she’s not in school. We are blessed to have such flexibility…not every family with a child with special needs is as fortunate.

Dave is still with Hy-Vee and our new store is continuing to bless us with brisk business. Our kettle corn business had the best ever summer and we can’t wait to start it back up May. Dave’s ankle is still healing, though I think it will always give him some trouble. He’s very cautious on the ice now! He still works a ton of hours, but I don’t think Dave would be happy unless he did. He doesn’t really have any hobbies since he works so much, but he’s a political junkie and keeps up on what is going on all the time. He’s still is, and will always be, a hard core conservative.

Tonight we are settling in as another big winter storm hits us. The wind is terrible and the temperatures are absurdly cold! We aren’t able to make the trip to church tonight because the roads are getting bad and we can’t risk another car. We were planning an extended family Christmas with Dave’s family on Saturday, but it looks like some family members may not be able to make the trip because of the weather. It is very disappointing but it is what it is. Hopefully we can find another time to get together soon. I hope all of you in the path of this storm are safe and warm!

Merry Christmas to all and a Happy New year! We hope 2010 brings you many, many blessings!

Christy, Dave, Lukas, Baylee & Colton

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