Baylee 101

This is our latest CdLS-KIDS Blog Challenge.

Baylee 101

1.  Baylee is 11 years-old.  She will turn 12 on April 8th.

2.  Baylee likes to eat.  Her favorite room in the house is the kitchen and will spend hours in there foraging for food and grazing.

3.  Baylee’s hair is off limits.  Don’t touch the hair!

4.  Baylee loves music and watching Nickolodeon.

5.  Baylee touches everyone she meets.  She has changed many lives.

6.   Baylee loves baby dolls.

7.  Baylee’s baby dolls cannot wear clothing.

8.  Baylee is an expert at using a DynaMyte (an augmentative communication device).

9.  Baylee is our designated household toilet lid inspector.  All toilet lids are always down at our house.   This is a quite helpful quirk in a household of males.

10.  Our cats love Baylee because she lets them outside.

11.  Baylee can run very, very fast, but like the cheetah, she tires quickly and mommy can always catch up eventually.

12.  Baylee loves the movie “Lady and the Tramp”.

13.  Baylee loves to swim and can say “Pool” and “suit on”.

14.  Baylee notices every detail wherever she’s at….nothing goes unnoticed.

Baylee’s new word!

As is typical with the syndrome, speech is very difficult for our kids. Baylee has some words, but mostly only single words and very rarely a very short phrase. It is very exciting when Baylee says a new word! Her newest addition to her verbal dictionary is….drum roll please……”PLEASE”. The girl has manners! It sounds more like “peas”, but we’ll take it. Now I’m making her say “peas” for every request she makes and I’m sure she thinks I’m a bit nuts, but I just like to hear her say it.

Small victories are huge with our kids. 🙂 It’s a bright spot in our not-so-fun February.

Spring, come quickly peas…..

2007

It doesn’t seem possible that I’m posting my second Christmas letter on this blog! This year has flown by! Once again, I’ve decided to save a tree and some printer ink by placing our Christmas “newsletter” on our blog.

Our year has been uneventful, which I always consider a good thing. We are continuing on our debt-free “adventure”, and getting ever closer to our goal. Dave is still with Hy-Vee, and he’s still looking forward to his new store opening, though the date has once again been pushed back to September or October of 2008. However, we’ll be realistic and just hope it opens before Christmas 2008!

Our Kettle Corn business is still thriving at our Farmer’s Market and we were very blessed to have a great season this year.

Since I’m Baylee’s primary caregiver, I’m sticking with my “lunch lady” job and I’m still getting my daily exercise delivering papers in our neighborhood. I love getting paid to exercise. To think I trained for my marathon in 2003 for no money at all! What was I thinking? I enjoy the fact that I never have to worry about care for Baylee since I’m either working when she’s sleeping or at school. This past October I attended my last board meeting in Maryland for the CdLS Foundation. I completed my service of 7 1/2 years, but I still remained involved with them as an awareness coordinator and webmaster.

Lukas is doing well. He is now 15, a sophomore in high school, and we are “enjoying” the hormones, moodiness and general know-it-all-ness of teendom. He is still participating in band, and while he doesn’t participate in athletics, we like to joke his “sport” is earning money. He’s a grocery-cart-getter-man and sacker at Hy-Vee, we pay him to help with our kettle corn business, and he helps deliver papers on Wednesdays, weekends, and inclement weather days. He has a nice, fat car fund growing at the bank, but we secretly hope that it will be a good long while before he’s able to buy a car and actually drive! The car will be one expense, but the insurance will be quite another! He’s a video-game fanatic, has had a steady stream of girlfriends (I’m not ready for this!) and is quite the speedy text messager. I consider myself quite tech-savvy, but the text messaging I just don’t get….and the girlfriends just make me nervous…..

Baylee is doing well. She transitioned to middle school this year, and she seems to be adjusting to the routine. She still loves her baby dolls and stuffed bunnies and they are a constant source of drama. They usually end up on our roof or over the fence in the neighbor’s yard and then she obsesses constantly about them until we can find a way to get them back into her hands. Once back in her hands, it doesn’t take long to start the process over again (lather, rinse, repeat….). She still loves listening to music and watching Nickelodean on the little TV in her room. During the summer she lives to go to the swimming pool and is even learning to swim without assistance! Unfortunately, she tries to get her “water play” fix in our bathtub and shower, so we have to keep our bathrooms locked or we have to deal with indoor flooding. The fun never ends when Baylee’s around!

Colton is in 5th grade this year. He started playing the French Horn like his brother. He’s a whiz at Guitar Hero 3 and has a gift for running. He can’t wait until he can run track and cross country in 7th grade, so in the meantime we run local road races. The front tooth he knocked out two years ago this past October is STILL hanging in there believe it or not. It wiggles and gives me the creeps, but it doesn’t seem to bother him a bit! He also has a knack for finding lost things, but only after we’ve replaced that lost thing. He left his bike in the front yard this summer and it was stolen. We replaced the bike, only to have the police find the old one less than 2 days after purchasing the new bike. He lost his winter coat last month, and found it the day the new coat arrived on the UPS truck. Now he has two bikes and two coats.

In May, Dave and I had the rare opportunity to get away overnight to go see Dave Ramsey at one of his live events in Kansas City. It was definitely our highlight of 2007! It was such an inspiration. We even got to shake his hand and have him sign our copy of “The Total Money Makeover” at a book signing the night before the event in Olathe. It was an honor to meet a man who has had such a profound, positive impact on our lives.

We wish you all a very Merry Christmas and a Happy New Year! May the peace of the season be yours…..

Christy & Dave

Why does she do these things?

Baylee is most destructive to things she loves. I don’t understand it. She tears up photos that she LOVES to look at and they are usually photos of people she loves. She loves her stuffed bunny, but she’s mean to it, too. She routinely tries to drown it, throw it in the trash, or over the fence where she can’t get to it. She’ll throw it out the window of a moving car if we don’t child-lock the windows. I don’t know how many beloved “babies” we’ve lost on the highway.

Baylee also loves her DynaMyte which is an augmentative communication device. It gives her a voice at school. She was so excited when we upgraded the color-screened DynaMyte from the Dynamo. Well, today she threw it in the kitchen sink and ran water over it. It’s fried. It cannot be repaired because the chips are no longer manufactured for it. We knew once the chip fried that it was done, but it was running perfectly until today. It will cost thousands and thousands of dollars to replace it with something similar and I hesitate to do so because I know she’ll just throw it in the sink again. I think sign language is the only safe option for her which is unfortunate. With the DymaMyte she could communicate with anyone. With sign language she’ll only be able to communicate with people familiar with her signs.

It is a sad day as we mourn the death of Baylee’s voice at her own hands.

Baylee Goes To Middle School

Yesterday Baylee started middle school! I was told she had a great day and seemed to adjust well, but she did not eat lunch. I suspect that she was overwhelmed with the new sights and sounds that eating just didn’t seem that interesting. Usually she’s a great fan of school lunch (or just about any lunch in general–Baylee never misses a meal!).

It is always sad to leave familiar faces and places, but change is inevitable. I think she’s going to have some great new adventures!

Baylee before school.

 

And the snowball rolls….

The snowball is still rolling! We are posturing ourselves for some big payments in the next two months. We plan to haul Amex to the curb this month and then plan to pay off our 300m early by the end of September. It will be the last car payment we ever make in our lives! That will leave just two more debts to go. Things will be tight, and it will also mean that our last five farmer’s markets need to be successes. I think they will be if it doesn’t rain and the Husker football games don’t interfere (the stadium is very close to the market).

We all know about best laid plans, so keep your fingers crossed for us. A few prayers would be greatly appreciated as well.

We are also making new transitions here with Baylee. On Monday, Baylee starts her first day of middle school. She’s so tiny, but she’s as strong as 10 men….a little wirey thing she is! I’m sure she’ll hold her own with all the big kids, but she’s been at her elementary school since she was three years old, so it’s going to be very different for her. I hope her experiences there will be as positive as they were in elementary school!

She is ready to go back to school. She’s been very restless and seems bored. She’s obsessed with the water faucet now and could stand there all day and run water if we weren’t constantly shooing her away. She’s ready for summer to be over. Her brothers, though, feel quite differently! I, however, am a bit sick of their bickering. Even if they don’t want to go back, I *need* them to go back….

Baylee’s Combo Procedure

Today Baylee had an endoscopy and good, old fashioned teeth cleaning under anesthesia. Her esophagus looked normal, but we won’t be positive until the biopsy results are back. No irritation or damage is visible, so that’s great news! The Prevacid must be keeping her reflux in check.
Despite the fact that she fights us when we try to brush her teeth, she only had one small cavity. This new dentist thinks he can now clean her teeth in office every six months. That is wonderful news! She is maturing, and while she doesn’t care for having her teeth examined and she is no model patient, the dentist thinks he can work with her! That is fabulous news because she really needs her teeth cleaned more often.

I had to stay home with the boys, so Dave and Grandma went with Baylee to the hospital. Dave said the Valium they gave her before the procedure didn’t even phase her. Hmmm….imagine that! Nothing keeps Baylee down!

She’s running around here now and staying very busy, though she looks pale and tired. We are all happy with the good results.

Things sure are quiet around here….

Things sure are quiet around here. Colton is at summer camp. Lukas is at Shrine Bowl Marching Band camp. Both will return tomorrow so I better enjoy my last day of peace. With Baylee being non-verbal, and no boys fighting, wrestling and screaming, it seems like I have stepped into another life.

Baylee has been her usual self and up to her routine mischief. She emptied the entire contents of her closet into her room. Every article of clothing is off its hanger, all the winter clothes I had stored on a shelf are strewn about, and there are books and hangers everywhere. What a disaster. I just don’t have the energy to put it back because I know, just like the busy ants who rebuild their hills after a rainstorm, Baylee will just rebuild her mess…..over and over again.

I’m almost ashamed to show this to you, but here’s Baylee’s latest work. She’s been a busy girl!

She has left most of the sheets on the bed, though. At least I won’t have to remake her bed tonight!

Baylee and her Bunny

If you haven’t noticed from Baylee’s photos, she’s usually carrying a stuffed bunny. She calls it “Baby”. Her relationship with the bunny is very odd, though. It’s what we call a love-hate relationship, and it’s a constant source of commotion in our house.

Our house and yard is like a minimum security prison. We have a six foot fence around our backyard with locked gates to keep Baylee from wandering. If the mood strikes her, she either throws her bunny up on the roof or over the fence into one of five neighbors’ yards. If it’s on the roof, she’ll bug us until we get a ladder and get it down. She will have an emotional meltdown, too, and obsess about the lost bunny for hours. If it’s in the neighbor’s yard, we wait until the neighbor feels like throwing it back over. Some neighbors are quicker than others. One even tied a pretty ribbon around bunny’s neck and set it up on the fence for her. Baylee doesn’t like her babies to have clothing or adornments of any kind, so that ribbon promptly came off. I thought it was pretty cute, though!

I think this is one part of Baylee’s personality that I will never understand. If she loves that silly bunny so much and she always has to have it with her, why does she throw it out of her reach? I sometimes think she likes the emotional distress.

As Dr. Phil would say, “How’s it working for you?”….

Mini-vacation

It’s hard to take a vacation when you’re a paper carrier. You are an independent contractor so you have to find subs. You can’t just take a week off and you can’t ever call in sick. We now have two routes to cover which makes it doubly difficult, but we wanted to get away this summer. We traded with other paper carriers–you do our route, we’ll do yours–and we were able to take a whole three days off last week! Unfortunately, next weekend we have to pay the piper with one of our subs and do his rather large route as well as both ours plus do kettle corn at the Farmer’s Market on Saturday morning. It’s going to be interesting and exhausting.

In any case, we headed to Waterloo, Iowa, to visit Grandma & Grandpa. We visited Lost Island Waterpark and met up there with Dave’s brother and his entire family who live south of Waterloo.

This was the first time we took Baylee to Lost Island. She wasn’t very fond of the fast water slides and the cold water made her shiver most of the time we were there. She liked the lazy river and the wave pool the best. The boys loved every minute of it, though. Baylee could take or leave it. We also found out she likes to visit Grandma and Grandpa, but she likes to be home, too. On Friday night and Saturday morning she started to melt down and was saying and signing “Home, home”. On Sunday, after papers, she went back to bed and slept until 1 pm! Why I didn’t take advantage of that and get some sleep myself, I’ll never know. When Baylee sleeps, I should sleep as well….but there’s always so much to do….