Wednesday, October 31, 2007
The boys had a fabulous time at the school Trunk-or-Treat and are gearing up for round two tonight. I did end up putting together a SuperMom costume, only to arrive and see that the other moms were "dressed up" by wearing Halloween shirts or just orange and black clothes. Harumph!
Happy Haunting everyone!
Tuesday, October 30, 2007
*On a sidenote, as I mentioned before, Blogger refuses to remember my password so I have to reset it every time I want to log in to post or edit. I got tired of making up "real" passwords, so I tend to use it as an outlet for frustration about the glitch. Just now I set it again to add this link & it always tells you how weak your password is to make sure you don't do something dumb like set it to the same name as your blog. Well, I was just told that eatmybutt is a really strong password. :) Oh that makes me smile! *
When I was a young adult in the early 90s, I was certain that I would always live an alternative lifestyle. I dyed my hair black or burgundy, shaved it, sprayed it into a haystack, wore copious amounts of black clothing and spent almost every waking moment listening to Goth, Punk, and Techno music. I started my college education at a small university in Alabama and most definitely was known as the "town freak." Granted, I had a little posse of like-minded friends, but nonetheless I managed to stick out like a sore thumb. When I transferred to KSU, I met even more like-minded friends and felt secure in my expression of individuality. My music tastes broadened to Grunge and Power Pop in my new setting, and my clothes slowly emerged from the black pit. Eventually I needed to get a job, so I even tamed my hairstyle. I just started getting tattoos instead.
Towards the end of my long stay at KSU, I ventured into more organic interests. I grew my hair out to the middle of my back, wore long skirts and sandals, and preferred Blues, Jazz and Folk music. Suddenly those days of the dark punk life seemed to harsh and cold.
Manhattan has several Local Legends. These are people that you may or may not know personally but have crossed paths with many and made a lasting impression. There is Terry the Candle Man, a middle-aged man that rides a 3-wheel bike with a basket full of his handmade candles that sells to provide for himself. Terry is a sweet, kind man who always has a smile and friendly hello as he passes you. Then there is Bob, the vision-impaired elderly man who has his own seat reserved at Auntie Mae's Parlor. It's just not the same without Bob around.
We only lived in Goodland for a couple of years, but Local Legend John Golden was impossible to miss. This patriarch of Goodland always knows the best place to eat lunch on certain days of the week and never fails to greet you with "Isn't today the best day of your life?!" You know he is going to say it and no matter how grumpy your day has been, you can't help but reply, "Yep, every day I am alive and my family is healthy is the best day of my life." He can tell you the elevation of every county in Kansas. He can tell you about any part of the world you have ever been, because he has been there too. His wisdom, enthusiasm and honesty are traits that I can only hope to achieve.
We've been in Hutchinson for two years now and there are two Local Legends that have caught our eyes. We don't know them yet and we haven't heard their story. The first person that we noticed is a man in his 60s who roller skates and wears big 1970s style headphones as he cruises around town. Regardless of the weather, he is out there skating to and fro. We have seen him eating at Fraise Drugstore, and the skates do not come off. The second one is a guy, could be 25-30 yrs old, with long dyed black hair, seen wearing a knee-length fur coat, fishnet stockings, and Ugg boots in the winter. His summer attire is fishnets with heels, short skirts and tank tops. The interesting thing is he is always on an old three speed bike. We have never seen him walking in a store or restaurant, he just is on the bike, back and forth across town. I'd love to hear what their stories are!
I'm in my mid-30s now and I have certainly merged into someone that blends in with the crowd. I feel so out of place at rock shows now. I'm more likely to point out haystacks to my sons then to consider it as a hairstyle. I don't yearn to be the young adult I was, but I don't want to be WalMart Mom either. My parenting choices are alternative to some, but I have a wonderful group of like-minded friends that keep me company. My parents are thankful that I don't get tattoos anymore (though I would like one in honor of my kids) and I am presentable in nice settings. I may not be a Local Legend, but I think I am still on the path to being the individual I want to be.
Monday, October 29, 2007
I had high hopes of winning on ebay a Captain Feathersword costume for Sean to wear this year. Unfortunately, I just couldn't bring myself to bid over $20 for a used costume. So Sean is going as Woody from Toy Story and he is equally happy about it. He has taken such a fondness to Woody lately, he will play with the Woody doll we have for over an hour. Yesterday he wouldn't let go of him at naptime, so Woody slept with us. Sean thought it was terribly funny to share "milkies" with Woody, even made lip smacking sounds as he held Woody up to my boob! Eventually, they both took a nap and I headed downstairs. An hour later, Sean apparently woke up, saw Woody & pulled his string a few times (we could hear him over the baby monitor) then he went back to sleep!
I tried talking Aidan into being Buzz Lightyear since we thought it would be so cute for them to co-ordinate. Instead he insisted on a Teenage Mutant Ninja Turtle costume. Doug and Aidan went to a Halloween party at the United Methodist Church Sunday evening and had a blast. Aidan's costume fit perfectly, which is a first. Doug said they loaded up on candy and pigged out on it right away. Aidan quickly made the discovery that lots of candy on an empty tummy is not a good feeling.
Wednesday the preschool is doing Trunk-or-Treat and I volunteered to help hand out candy & run the games. I also have to put together a costume to wear. I was thinking about going as a farmer, but alas I somehow gave up my jean overalls from college. Might have to visit the Goodwill. Aidan said I should wear a cape and my sparkly eye mask and be SuperMom. He's my schmoopey boy!
Sunday, October 28, 2007
So here's what we did yesterday instead of blogging.
First, the Break It Fairy has completed her Break Three Things Then Move On Challenge at our house. First, the Break It Fairy broke our sliding glass door to the backyard. I was coming in the house, carrying Sean. When I pulled the door open, Aidan thought is would be clever to try to lock me out. Somehow the door managed to get jammed up off the track. Doug attempted to fix it with brute force (ala Minner Repair Style, lots of "Scum Sucking Son of a ....") and split the wood frame around the door. It's toast.
Second, the dishwasher from hell was running the dry cycle and started emitting hideous fumes, definitely killing brain cells. The motor is burned up, the dishes reeked so I had to re-wash them by hand and now Doug is the official dishwasher in the house. He does not want to replace it until the Hutchinson Reverse Osmosis Water Plant is completed in 2009. I have a hard time seeing him keeping up with dishes for the next year when he can't even keep up with the lawn mowing and that is only needed once a week.
Third, the boys ran downstairs to snuggle by the Heater Box yesterday and after 10 years of loyal lovin' the Heater Box has died! Seriously, a cause for drama and mourning in our house.
To top all this off, I was in a headlock from Aidan the Amazing and somehow lost the temple screw on my glasses. Doug taped that puppy back together (no, not with duct tape, Dad) and we decided a trip to Sears was in order.
Sears optical fixed my glasses, we were overwhelmed by the dishwasher choices in the appliance dept and underwhelmed by the Heater Love for sale. I popped into Hobby Lobby to get leather cord to repair Woody's hat for Sean's costume, then we went home. Sean and I had a lovely nap together, while Doug and Aidan amassed a fortune on Webkinz.
Around 6 we decided that it would be fun to load up in the car and drive an hour to eat at Chipotle. Nothing like a dinner date on the road with preschoolers! At least we finally got to watch all of The Reef (aka Shark Bait.)
Well, I hope to not miss any more days, only three left. Yep, I can do that.
Friday, October 26, 2007
Aidan went to the office to hang out with Daddy while Sean got his haircut, so we went over there afterwards to pick him up. Sean made his rounds, saying hello and giving Dolores a quick wave, then down to Unc Curt's office for another quick hello, before arriving in Daddy's office to shout "Dadda!" He played with the intercom on the phone a bit, then trotted off thru the building in search of fun. He went down to the old dining hall and pulled up a seat at the piano. He was delighted in his music abilities, which I must say were not as painful as some others I've heard on that piano!
With much effort, I got the boys back in the van to make a trip to the grocery store before heading home. Needed: cat food. Bought: cat food, box of fruit roll-ups, 6 pack of mini Sierra Mist. I decided to try to have the boys hold my hand and walk to the car, so I didn't have to push the cart back in. Sean saw this as an opportunity to bolt and headed down the sidewalk in the opposite direction as fast as he could. Sigh.
Once home, Sean was determined not to go inside, so I herded him to the backyard and pointed the jeep in the right direction for him. The boys played nicely in the backyard for a good 40 mins, filling up a basket and toy wheelbarrow with leaves.
Aidan had his mouth set on eating at Subway today, so we got back in the van to take Daddy to lunch at noon. Aidan has become an amazing eater lately, he is just hungry hungry hungry all the time. After lunch, Daddy headed back to work & I looked forward to a quiet afternoon at home. The boys played some, then Sean and I went to bed for nap time (yes, I actually dozed off for a few minutes!) I forced myself to get up, head downstairs and clean up the tornado of toys through the house. Aidan was a sweetheart and helped me collect the pack of cards Sean scattered through the rooms.
Won't be long before the little man is up again and I have to get dinner going. It's Chicken ala King tonight! A nice warm meal to settle us in for the night.
Thursday, October 25, 2007
It was warm enough to make a trip to the park yesterday. We had planned on going to feed the ducks, but there were so many that they swarmed the van & scared the daylights out of the kids! Huge geese were taking whole slices of bread out of Aidan's hands. So we drove a bit more and played on the playground instead.
Yes, I had to carry Sean away kicking and screaming when it was time to go!
Wednesday, October 24, 2007
I feel so grown up! Doug and I went to our first P/T meeting last night while Unc Curt stayed with the boys. Let me tell you, I like P/T meetings so much better than IEP meetings!
First we met with Miss Sarah, Aidan's teacher. She told us about all the great skills he has and which ones they are going to be working on. He needs a little help verbalizing his feelings when he is hurt or sad, right now he tends to cry when he is upset. She said she is a little tougher with him because she wants him to be more independent to prepare for kindergarten. Miss Sarah is such a sweetheart it is hard to imagine her as tough. Aidan really likes her and she seems to be able to reach him in a way that he relates well to. She also showed us the writing program they are using and gave me some pages to take home that explains how to teach him to make his letters they way they will be teaching him. Aidan has been very interested in learning to read and write more, so this will be so helpful! The drawing above is one Aidan made of his family, I love how he is getting the understanding of scale! Miss Sarah thinks that Doug and I should spend one hour a week away from the kids. She thinks it will strengthen his sense of independence and also responsibility as a big brother. Hmmm, what to do for an hour a week....
Then we went to Sean's room and met with his teacher, Miss Ronda, the speech therapist and the physical therapist. Miss Ronda talked about what Sean has been learning and is very happy with how he is adjusting to school. He has used the potty 3 times successfully, is making improvement in the feeding therapy, and interacting well with his classmates. She surprised me by telling me that Sean has started matching colors! I haven't been able to get him to do that at home yet, I thought he wasn't even aware of colors yet! Woo hoo! We will have to keep working on this at home.
Miss Ronda has been telling him that he can not crawl up steps and she holds his hand on the rail as he walks up them instead. Well, Sean shocked me yesterday when I told him to come upstairs with me. He put one hand on the wall to steady himself and walked up the first half of the stairs by himself! I couldn't believe it! Makes me nervous to think about him walking down, but up is great!
Both of the teachers told us that they would like it if Aidan did not call his brother "Seanie" at school. They have been telling him the Sean is a big boy now and goes to school like a big boy so we need to call him Sean. Yikes, that's a nickname that we have been using for as long as Aidan could say Seanie! It's going to be hard to break that habit, for all of us.
Tuesday, October 23, 2007
This family trait traces back to Sean's Great-Aunt Linda, maybe even further back than that. Through Minner family folklore, I have been told that when Aunt Linda was a sweet young princess girl, her Daddy doted on her quite a bit. Every morning, he would make his baby girl a cup of cocoa and if little Linda was chilly, she would snuggle up in front of the heater vent while sipping her cocoa.
Her nephew, Doug, inherited the Heater Hog Gene, and also grew up finding comfort in front of a heater vent. He was especially fond of curling up in a ball over the vent so that he created his own little heater cocoon. His love for warm air blowing in his face didn't not stop as a child, as he grew bigger and bigger he continued to spend chilly mornings toasting by the vent.
When Deborah and Doug met and Deborah first saw the Heater Love in action, she was quite surprised. "Hmmm, I like being warm," she thought, "but I have never seen anything like that." A six foot, four inch man wrapped around a seven inch vent. Interesting. Then he convinced her to give it a try. Sweet Lord, what a warm and wonderful feeling! They would snuggle together in their jammies by the vent, and let out a "awww man! It's shutting off! Go bump up the temp a little so it will kick back on."
Then Deborah had a absolutely sinful idea. Wait a minute! I have a little box space heater from my college apartment! We could sit by it & it will never shut off! Just think of the toasty minutes we can enjoy there! Doug was doubtful that it could be as soothing as the vents he loved, but one minute in front of that puppy and he was hooked!
When the little Heater family grew to three, Doug introduced his one-month old son to Heater Love. He laid on his side on the floor, curled up with his baby tucked next to him. Aidan stopped stirring and fussing, he relaxed and opened his eyes, looking at his dad to say "Oh yeah! Now that is what I am talking about!"
Every fall, out comes the little heater box and the Heater Hogs gather around it in the morning. When the Spring brings warm mornings, the beloved heater box is fondly packed away.
The Heater Hog family has grown to four and it gets tough to find a spot in front of the heater every morning, but Daddy always tries to make sure they share some with him. This morning it was 37 degrees outside, but two little boys, sitting in front of the heater box with a fleece Heater Tent Blanket around them, felt that the morning was warm and cozy.
Monday, October 22, 2007
Here's the complete article, 10 Down Syndrome Facts. By merely reading on the NDSS website, the editor could of verified that the following statements are out-of-date:
Almost 95% of Down syndrome babies are born with an extra chromosome in each cell, making 47 instead of the usual 46.
Fact: the remaining 5% of people with Down syndrome have Mosaic Down syndrome, which means a certain percent of their bodies cells contain the extra chromosome.
Down syndrome is a chromosomal disorder that affects about one in every 1000 live births.
Fact: One in every 733 babies born in the U.S. has Down syndrome.
Children who have Down syndrome have broad and flat faces, flattened nose bridges and slanting eyes. They used to be called ‘mongoloid’ because of this Eastern appearance.
Fact: A person with Down syndrome may or may not have those physical features. Some have several characteristics in common with others with Ds, others only have a few.
The average life expectancy of children born with Down syndrome is 35 years if they survive the first five years.
This one made me sick to my stomach when I read it! NO! That is not right!
Fact: The life expectancy of people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 56 today.
Survival rate at birth and through early childhood is very high. There is no reason to make the remark "if they survive the first five years." As medical advances continue to be developed, this age is only going to go up!
Many Down syndrome kids have heart problems.
Fact: 40% of of people with Down syndrome have heart defects. Some require open heart surgery to repair, others require medication, and others eventually resolve on their own.
Their average IQ is 50, as opposed to a 100 in children who are not mentally impaired.
Again, another inaccuracy that made my heart sink.
Fact: Most people with Down syndrome have IQs that fall in the mild to moderate range of retardation. Children with Down syndrome are definitely educable and educators and researchers are still discovering the full educational potential of people with Down syndrome.
Wow, wonderful article. Great way to encourage newly diagnosed parents to feel positive about their child's future. Can you read my sarcasm???
The article gives readers the option of voting on how they liked the article. Please rate it low and if you are inclined, email the editor! We want it pulled! I do not want a scared, worried parent with a prenatal diagnosis to Google Down syndrome and find out of date information like this. That parent may be making a life or death decision and I want them to hear the FACTS and good stories about what life is really like!
Thank you friends.
Sunday, October 21, 2007
Of course, I waited until today to do it even though I've had the supplies for the past week. In fact, I am still in the process of running them through the wash cycles now. I made two shirts for Sean, one is pink, purple and blue and the other is pink and green. Of course, I made one for Aidan as well, he loves pink.
I couldn't go through all the time and trouble for just three shirts, so I decided to dye Sean's prefold diapers as well. Now he has 2 orange, 2 purple, 2 green and 2 tie-dye diapers. Silly, I know, since they just get covered with a cover anyway, but cute nonetheless.
I couldn't find my rubber kitchen gloves (Sean has a habit of stealing them to wear around the house & who knows where they are now) so I also dyed my hands a bit. :)
I will add a pic of the colorful project when they are done drying.
At least my son will have a chance to point out his pink shirt on Monday.
Edited to add a photo! Sean is wearing one of the shirts today, but here is the rest. The shirt in the foreground is Sean's shirt for tomorrow. Doug is not so crazy about the 3 bullseye targets. Hey, it's supposed to be fun, right? The orange & green tye dyed diaper is fugly! Good thing he's just going to poop on it.
Saturday, October 20, 2007
Kelly is asking for readers to send her photos of their child with T21 reading a book, or being read to. At the end of the contest she is giving a selected winner a gift certificate to their local independent bookstore. I don't think there is one in our town, so I will just share a couple book pics here.
I also got tagged by Melissa at Banana Migraine to post a list of Sean's seven favorite books. He gave me a book report of the following nonfiction novels and said they were best sellers. :)
1. Hand Hand Fingers Thumb by Al Perkins
2. Baby Einstein See and Spy Counting by Julie Aigner-Clark
3. The Very Hungry Caterpillar by Eric Carle
4. The Rainbow Fish by Marcus Pfister
5. Thomas & Friends: Good Morning, Engines by Rev W Awdry
6. Tails by Matthew Van Fleet
7. Little Cricket's Song by Joanne Barkan
I'm suppose to tag seven others to make a reading list, but I am not sure if I know seven others that haven't done this already. So if you haven't played yet, feel free to do it now!
Friday, October 19, 2007
Thursday, October 18, 2007
Sean misses you terribly. It is time for you to give up the good life in Florida and come back to soggy Kansas. Your biggest fan is getting quite tired of hearing "Sorry, sweetie, Grandpa isn't upstairs" every day when we go to get Daddy.
Wednesday, October 17, 2007
Homeschooling has never been an option that I felt compelled to try. Not because I don't believe that my children can learn and excel in that environment, but rather that I feel they would benefit more by learning from a variety of teachers and their peers. I realize that the education system varies greatly from place to place and that funding for the programs I'd like my kids to experience may not be available. Therefore I plan to continue and broaden their education beyond the school day.
I grew up attending schools on a military base for all but a few years. Many might knock that eduction, but I feel it gave me a very rich variety. I was in an ethnically and financially diverse peer group, yet we all had the military family experience in common. We knew the hardships of being the new kid every three years. We knew what it was like to lose your best friend when their family got transferred. We learned so much about over cultures and traditions, very few had never lived outside of the US. I started learning French in the 3rd grade and studied it for 5 years. Art was always a part of my education. Geography has meaning to a child that travels outside of the city limits.
My sons are just beginning their formal education. This is the first year they are in preschool and next year Aidan will attend all-day kindergarten at the magnet school 3 blocks from our house. Both boys have grown and blossomed in their new school. They are attending the Early Education Center Preschool, the classes are 50% Special Needs Children and 50% Peer Role Models. I have been so impressed with how Sean has adapted to this environment. He is a full head shorter than his peers, yet they do not treat him like a baby. His teachers give him the same tasks and responsibilities as the other children, yet assist him in completing the task as needed.
What I love the most, is that Sean has developed his first friendship with a peer. We have moved and changed our living arrangements so much in his 3 yr life that he has not had the opportunity to spend time with other kids his age before now. He enjoys playing with his brother, cousins and the 5 & 7 yr old girls down the street, but this is his first chance to get to know kids his age.
I had no clue that he had made a friendship already until I took him to school one morning a couple of weeks ago. When I walked in his classroom, another mom was dropping off her daughter and Miss R (Sean's teacher) said, "Amelia has been waiting for Sean to arrive! She wants her mom to meet Sean."
I said, "Oh, hello!" to this sweet faced little girl with long light brown hair swept back with a pink bow. She grabbed her mom's hand and said "Mommy! This is Sean! He is my friend!" Her mom smiled at us and said hello as I tried to hang up Sean's jacket and backpack. Amelia said, "Come on, Sean, let's play!" Sean eagerly accepted her hand and said "Bye-Bye!" to me.
The feeding therapist recently sent home a DVD of her sessions with Sean. She works with him while he sits at the snack table with the other kids. In one clip, Sean has Amelia at his side. Miss R is trying to encourage Sean to put teddy grams in a bowl of applesauce, or to bring a utensil with applesauce to his lips. Amelia gets out of her chair and stands face to face with Sean. She opens her mouth, saying nothing. Miss R says "What is it, Amelia? What do you need?" Amelia opens & closes her mouth again, looking at Sean & he is copying her every move. Miss R says, "Oh! You are showing Sean that you have a teddy bear in there!" Amelia swallows and smiles, "Yes! See, Sean, put it in!" and she pops another bear in her mouth. Sean opens & closes his mouth. Amelia directs "Now you put one in your mouth Sean!" He smiles, laughs, shakes his head and says "no!"
It may not of worked that time, but it is certainly reaching him! I get notes home every few days that say "Sean licked a Teddy Gram! Sean licked a Cheese Cracker!"
This morning I took Sean to school and he has been rather fussy since yesterday. Amelia and another girl were walking on the textured therapy squares together. Sean saw her and wanted to join her, so we sat to take off his shoes and SMOs. He got mad at me for slowing him down with that when he was ready to play.
Yes... public school is the right place for us.
Tuesday, October 16, 2007
1. I love to read your comments! I need all the encouraging to keep doing this as I can get!
2. If you click on the photos, you can see them larger.
3. I love comments. :)
4. If you click on the bold, green words in the text it will take you to linked websites. Snazzy, huh?
5. I really love comments! :) :) :)
6. Did you notice I added a hit counter to the bottom of the page? Man, I am learning all kinds of new tricks!
7. I really do love comments!
8. I apologize for typos, I tend to be short on time when I write these and often find little things I miss when I check in later. I promise that I did go to college and graduated!
Monday, October 15, 2007
I became interested in using cloth diapers with Aidan was born and I met other moms online that cloth diapered. I would cruise through diaper sites trying to figure out what everything was & how to use it. The choices for cloth diapers are endless now, it is so different from the plain white flat diapers & rubber pants my mom used on her three daughters. I ended up not using cloth with Aidan, because he went to work with us every day until he was almost 10 months old, then he went to daycare. At the time, I didn't think cloth diapering would work unless you were at home, able to do frequent changes & run the washer often.
I re-visited the idea when Sean was born. I managed to convince Doug to let me buy a small amount to try out to see if it was something that would work for us. I thought it would be a good investment, we had two in diapers and the expense of buying disposibles was not appealing. I had read that children with Down syndrome often do not potty train until over the age of 4. I also read that using cloth helps the child potty train because they can feel being wet easier and get changed more frequently so they are not used to be left in a wet diaper for long periods of time.
When Sean was four months old, we finally got started out using cloth with 6 Fuzzi Bunz Pocket Diapers and 3 Kushie All-In-One Diapers. My dear friend Jane sent me a few other diapers to try as well. I found that I liked using the cloth diapers and it wasn't as difficult as I thought it would be. Sean started going to daycare when he was six months old and I never thought to ask if they'd use the cloth (I just assumed they wouldn't.) I tried to use it at home, but eventually I quit because it just didn't seem like we were using it often enough. I sold off the diapers we had and went back to sposies.
A year ago, we decided that it would be best for the boys if I quit working and was home with them. After being home a couple of months, I suggested to Doug that we again give cloth diapers a go. I figured it would save money in the long run and there was not any reason why it should work out this time since I'd be home all the time. This time, I bought 5 Very Baby All-In-One Diapers and a few Fuzzi Bunz. I read about a new cloth diaper that seemed to be revolutionizing the diaper world. I bought my first BumGenius Diaper to try out and quickly fell in love. Doug loves using the BumGenius diapers, they are called the Daddy Dipes by many. I sold the Very Baby diapers because I didn't like how long they took to dry and invested in more BumGenius.
Over the past year, I am occassionally enticed by new or different diapers so our diaper stash has changed from time to time. When Sean became the Master of Velcro, I re-vamped the stash to consist of diapers that have snap closures. Blueberry Pocket Diapers are now the bulk of what we use. I have even found love for the classic prefold diapers like my mom used! We use them with adorable & durable Wiggle Worm Bottoms Covers. No yucky rubber pants for my boy!
Now my love of cloth diapering is trying to branch out to others. On October 25th I am hosting a class on cloth diapering for my local La Leche League group. I bought an adorable all-in-one Nanas Bottoms diaper to give as a door prize. I also found 3 matching wipes by Miss Mindi to include with the diaper.
I also bought 18 cloth wipes for the class, made by a WAHM, Miss Mindi. I plan on pinning a fact about the benefits of cloth diapering onto each wipe and giving one to each parent that attends the class. We will discuss the benefit & then they get to keep the wipe!
Also, I did a little birthday shopping for my niece, Mackenzie. She loves Sean's cloth diapers and wanted some for her dolls. I had these cute ones made out of Minkee fabric by another WAHM, Stacey. Since I don't have any dolls, I had Mr Brown Bear try them on.
It may be a long road before Sean is using the potty full time, but in the meantime using cloth diapers sure makes the baby stage a lot more fun!
Sunday, October 14, 2007
Saturday, October 13, 2007
1. When Sean went to the Pediatrician this week, she mentioned that one of Sean's ear tubes fell out & is laying in the ear canal. She couldn't see the other tube because his ear had too much wax in it. I totally spaced this off and forgot to ask what we do now, so I stopped in the next day and spoke to her nurse. Her nurse said that usually they don't get them done again until a hearing problem occurs again.
This does not sit well with me, since the reason Sean has tubes is because he gets build up and then hearing loss. He doesn't get infections that much, just too much fluid. With cold season approaching, I want to keep his ears healthy. He has already been sick twice since he started school. So I am calling the ENT myself to hear what he has to say about this. Sean has had a great sign and verbal language burst this summer and I want to keep the progress coming!
2. I also got the test results from his blood work. All is normal! yay!
3. The eye doctor said that Sean is now showing signs of minor far sightedness. This is probably why he is squinting. He suggested we wait and see if there is improvement. We go back in three months to see if there is change. If it isn't better, we will give glasses a try.
4. Doug discovered today that Sean knows how to unlatch the backyard gate by himself! Apparently Sean let himself out, with his push mower toy, and headed down the sidewalk to go for a little stroll. The neighbor two houses down brought him home. Doug said, "I don't know how he got out, I latched the gate and made sure the yard was secure!" He took Sean out back and said, "Did you open this?" Sean said yes, then showed Doug that he can do it himself now. Or lord... this little man is just too smart for his britches! I guess we need to put a better lock on it tomorrow. Thank you God for watching over him on his adventure!
5. There's a great book of photos of children with Down syndrome that I'd love to own. Since my German is extremely rusty, I will just have to enjoy the photos! YOu can check the book out here Prince Vince Contest
Friday, October 12, 2007
I'm here to tell you something you might not know.
It's the turkey gene. Yep, you heard me, when the 21st chromosome comes in a set of 3's... a turkey is produced.
I didn't give birth to a Downs baby, I gave birth to a turkey. You could of heard the gobble gobbles clear through the Labor & Delivery Ward!
Now I am sure you are wondering where the scientific evidence is to back this up. Allow me to give you some excellent case studies:
1. Momma sits down to fold a stack of freshly laundered diapers, neatly sorting them in basket- Daddy's Favorites, Teacher's Favorites, Momma Favorites. Little Angel Boy is playing on the back deck with big brother. Momma leaves the room to get the phone. Momma returns to the room to see big brother laying on the floor while little Angel Boy is burying him in the now unfolded stacks of diapers.
2. Momma is writing up a witty or thoughtful or informative story on the computer. Little Angel Boy is sitting on the floor removing every.last.piece.of.paper from the art & coloring drawer of the bookcase.
3. Momma is making dinner in the kitchen, right next to the computer room. Little Angel Boy starts yelling "Mom Mom! Mama! Mom! Mom Mom! Mama! Mom!" He comes trotting into the kitchen, frantically pointing into the computer room. Momma dries her hands and walks in to see what happened. Little Angel Boy leads her to the bathroom where he proudly exhibits his original works of fine chalk drawings on the bathroom door, bathroom cabinets, and computer room carpet. Big smiles on Angel Boy's face.
4. Momma takes Little Angel Boy to the pediatric opthomologist today, concerned about the Popeye face Angel Boy has been making. Momma sits on a chair watching Mr Independent Angel Boy as he sits in the kiddie area. He opens a book to read, then drops it on the floor. Momma raises an eyebrow. He opens another book, quickly closes it and peeks at Momma over his shoulder as he drops it to the ground.
Momma gives a warning, "Sean, we don't throw books on the ground. Clean up, please."
Angel Boy grabs book number three, doesn't even bother to pretend to open it, again gives a little smirk as he drops it to the ground.
Momma starts to fear the other adults will think she is raising a hoodlum, so she gets up and starts walking the 4 steps to the kiddie table.
Little Angel Boy gleefully giggles and rapid-fire tosses books to the ground, trying to clear the table before Momma can grab him.
All other adults in the room are smiling and laughing at Angel Boy.
I rest my case. Mom, let's have ham for Thanksgiving, I have more than enough turkey at home.
Thursday, October 11, 2007
Team Strolling for Sean, 2007 Our group on the walk. Cousin Jack taking it easy. Cousin Mackenzie & Big Brother Aidan cruising in the wagon. Stopping at our poster along the trail. Crossing the finish line. Sean says thanks to all his peeps. Aunt Tanya and Cousin Seth. Daddy and his boy.
I uploaded a couple of very short videos from the walk, can you tell these kids love to be filmed??!!
Wednesday, October 10, 2007
His check up went well, Dr L was pleased with his progress and health. She talked to me about the Flu vax vs the Flu mist. I told her that over the past month he has started closing his right eye while looking at things, makes him look like Popeye. She noticed him doing it while we were there and said that the pediatric opthomologist would have a look at it. We see him on 10-12, so I guess we will know more soon. She thinks we may need to patch his left eye for awhile so Sean can stregthen the right eye. Great, now I will have a real pirate in the house!
Sean got a booster shot and was easy going as can be about it, because he was clutching on to a jar of food I said he could eat after that. He was happy with the Scooby Doo bandaid the nurse gave him. After his snack, we headed to the lab for a blood draw. Sean gets his thyroid and white blood count checked every six months. Childhood luekemia is more common in kids with Down syndrome, but has a very high success rate of beating it if it is detected early. Thyroid problems are also more common, so they need to be watched, too. The nurse gave me a choice of taking it from the vein or by squeezing drops off his finger to fill 5 tiny tubes. I said go for the vein and it will go faster. Sean impressed the waiting room full of people but not crying or fighting the blood draw. What a tough kiddo!
I am always nervous about Sean having unusual blood work. I feel we have been relatively blessed by his good health so far and it always feels like I am waiting for the other shoe to drop. Hopefully we will get good news again this time.
Tuesday, October 9, 2007
Hope you enjoy seeing it again as much as I do!
Monday, October 8, 2007
1. Sean is a vegetarian, but the only vegetable he eats is sweet potatoes.
2. Sean has oral aversions that we our working on overcoming by doing feeding therapy. He only eats a minimal variety of baby foods and certain yogurts.
3. Part of Sean's oral issues, is the fact that the muscles in his mouth have low tone, making it difficult for him to move food properly to chew. His mouth is hyposensitive (this means that he can not feel food/liquid in his mouth very well.) He feels the need to pack it full in order to feel it so he can then move it around to swallow. This is why he enjoys packing tissues, wet wipes or other objects in his mouth. It gives him the sensory input he needs to feel things in his mouth. He has difficulty drinking from an open cup, because he needs to fill his mouth full of liquid before he knows it is in there and needs to swallow.
4. Sean has developed a very strong gag reflex in defense of foods because he does not want to choke on textured food. If we have been successful in getting him to chew a piece of food (like a pea) he spits it out after a bit because he does not trust his ability to swallow it without harming himself.
5. Sean has had reflux since birth and was only a daily medication for it until he was 18 months old. The last swallow study he had determined that he moves liquids very slowly to his stomach because the muscles in his esophagus are weak/have low tone.
6. Trying to overcome Sean's feeding difficulties has been one of the most stressful aspects of parenting him. It has caused feelings of anger, hurt, disappointment, fear, embarrassment, and frustration.
7. It costs $35 a week to feed Sean the food he is willing to eat.
8. Sean has been breastfed since birth and continues to breastfeed at age 3. Breastmilk does not lose it's beneficial properties as the child ages. The less the child consumes, the more concentrated the nutrients in the breastmilk become.
9. Sean nurses an average of 4 times a day. Once before nap, once after. Once at bedtime and once in the morning. He night weaned himself this summer, so we usually get to sleep thru the night now.
10. Breastmilk is said to increase IQs by 3-5 points. The longer a child breastfeeds, the greater the cognitive benefits. UK Study results
11. Sean is not on any of the vitamin regements that some parents give their children with Down syndrome.
12. Sean has been learning sign language since he was 10 months old (when he started sitting independently.)
13. Sean made his first sign when he was 15 months old. The sign for 'more'.
14. The sign Sean uses the most is 'eat', which he also says at the same time.
15. The longer it takes you to respond to his request for food, the more he signs it and says it. EAT! EAT! EAT!
16. Sean is currently picking up animal signs, his favorite is 'elephant'. He also makes an elephant trumpeting noise as he signs it.
17. Sean adores the Wiggles and does the hand motions for many of their songs.
18. Sean's all time favorite Wiggles song is 'Hot Potato'.
19. Sean's Nana is a Wiggles enabler. She has bought him 7 Wigles dvds.
20. Nana also just bought him the complete set of Signing Times videos. Mommy is hoping Sean becomes a fan of them because the Wiggles are getting very tiresome.
21. As Sean is nursing to sleep at night, I often see his little hands signing away in his semi-sleep in the darkness of our room. Most of the time, he is signing Wiggles songs.
Sunday, October 7, 2007
Today we had my sister's boys with us, as they spent the night last night. We had made plans to meet my sister, her friend and my parents for breakfast at IHOP. Doug and I got all 4 boys dressed and loaded up in the car by 9:45. Not bad, we thought, but we figured everyone would still think we were moving too slow this morning.
Wouldn't you know, for the first time ever, we were the first ones to breakfast! Now, I am sure most people are thinking, what a boring post, who cares about them going to Sunday breakfast? Well, you are probably right, that is boring, but it is not often that I get everyone ready and out of the house to get somewhere early. I've got to take my opportunity to gloat when I can! Ha ha ha!
Anyway, we had a nice time, made a stop at Target so the boys could discuss Halloween costumes, then came home to pack up the nephews. The house is quiet now, well as quiet as it can be with a 5 yr old and a 3 yr old. We are enjoying the rest of our lazy Sunday. Aidan is watching a TMNT movie, I am hiding out in the basement rock room on Doug's computer, Doug is watching the Broncos get their butt kicked and Sean is taking a late nap.
Monday will be here soon enough, so it will be back into the busy mode. After the long weeks of preparing for the Buddy Walk, it is nice to have the down time today.
Hope others had a lovely lazy Sunday as well.
Saturday, October 6, 2007
Love and peace to everyone!
Friday, October 5, 2007
For as much nagging as I did to get them to write about Down syndrome, I can't believe how nervous I was! The reporter called me yesterday afternoon while Sean was napping, so with the help of the Barnyard movie website, I was able to keep Aidan occupied and have a quiet house to talk to her.
She said she didn't know much about Down syndrome, so she asked me some general questions about it. At first I thought, "wow, this is great, I can tell her everything I want people to know about Down syndrome and we can reach new people!" Then I thought, "oh no, if I tell her too much or make it too complicated she might misquote me and it will be terrible to have misinformation printed!"
She asked what causes Down syndrome and I explained that it is a genetic trait that occurs at conception. I briefly described how the egg has 23 chromosomes and sperm has 23, but sometimes when the join the chromosomes pair up incorrectly. I said that in people with Down syndrome, they get 3 of the 21st chromosome (also called Trisomy 21.) I left it at that, but in my mind I am thinking, "well, except if it is translocation trisomy 21, where they have 2 of the 21st chromosome and then a third that is broken and attached to other chromosomes." I didn't want to confuse her a with genetics lesson!
Then she asked about how "severely" affected Sean is by Down syndrome. I said, "Actually, you either have Down syndrome or you don't. You can't have a little bit of Down syndrome, just like you can't be a little bit pregnant." I did say that individuals with Down syndrome may or may not have certain features in common, some may have physical issues that others don't, some may have developmental issues that others do not. The point is that each individual is unique.
We talked about how we found out about Sean's diagnosis, why we chose to move, and what our hopes were for Sean. I was happy to tell her that people with Down syndrome are accomplishing so much now, thanks to the support of their families and communities and inclusion in schools and society. I wanted to let people know that our children with Down syndrome can achieve many goals and be a wonderful asset to society, but it takes the acceptance and support of everyone.
We talked about the plans for the Buddy Walk and a little about my participation in the Gifts book. She called me back later to say that she did some reading on the NDSS website to get statistics to include in the article. She said, "I want to say Down syndrome victims... but that doesn't sound right?" I said "No, no, no! Please do not say victims! They haven't been attacked by anything and they are not suffering! It's better to say "People with Down syndrome..." She also asked why some refer to it as "Downs" and I explained the gramactially correct way to state it.
After the interview, I felt pretty reassured that it went well and that I would be accurately accounted. I spent the rest of the afternoon, cleaning up the house, getting the kids in clean clothes for the photo, and hoping that they would co-operate for the photographer. They did remarkably well and the photographer was very nice. We might have to use the family photo he shot for the paper edition for our Christmas cards since no one else can get a decent photo of the four of us!
We stopped by the news stand and bought 5 copies of the paper this morning on the way to school. Each son took a copy into class to share with their friends and teachers. Tomorrow is our Buddy Walk Day and I hope our efforts to bring awareness reach many.
Thursday, October 4, 2007
Yesterday, several moms on DownSyn discussed pretend play and said that they had been told when their child was an infant that "this child will never have the comprehension ability to pretend." I strongly disagree with this statement! Children with Down syndrome are quite able to pretend! Whether it is feigning sleep, fake coughing or burping, being a superhero, cooking in a play kitchen, driving Matchbox cars, or loving on baby dolls- I have seen our kids do all these things and more.
One of Sean's favorite things to do is chat on the phone. Sometimes the little bugger even calls people on the cell phone that he has smuggled from my bag! A few days ago, he (with the great egging on of his big brother) decided he'd like to have a chat. Here's how we will be answering all telemarketer calls from now on:
I say phoey to those that say kids with Down syndrome do not have imaginations!
Wednesday, October 3, 2007
I searched in vain on Google help to figure out how to fix this problem, and gave up last night in a hissy fit that made Aidan ask Doug if he could sleep with him last night instead of me. I know, I know, you are thinking "Deborah? Have a hissy fit? Not possible!"
Don't spit coffee on the keyboard.
*Sigh* so I will just have to plug along and login the hard way until the Gods of Blog fix my stinkin account.
In other breaking news.... we went to the Annual Downtown Hutchinson Chili Cook Off this Saturday with Gramma and Uncle Toot. So what did I decide to make for dinner last night? Chili. Doug and Curt lied and said it was better than the 20 varieties they ate on Saturday. I think they were just happy they didn't have to walk 4 blocks to eat. Curt was so grateful that he took Aidan home for a couple of hours so they could play Nintendo together. Awesome!
Tonight, Doug and Aidan are going to the mall for haircuts. I suppose Sean and I will go along so he can spend a fortune riding the little blue car in the food court. Sean needs to visit his favorite barber this week, gotta look good for the Buddy Walk!
Tuesday, October 2, 2007
Monday, October 1, 2007
Woo hoo! Doug got started on the medals we are donating to this year's Down Syndrome Society of Wichita Buddy Walk this weekend. He spent Sunday afternoon making 100 insert plates with the 07 Buddy Walk logo. Now we get to assemble them. I am so pleased with how they look, I can't wait to give them to each walker with Down syndrome as they cross the finish line this Saturday!
If you haven't signed up to join us, or would like to send a donation in honor of Sean, there is still time! Click on the group's website: www.dsswichita.org to join Team Strolling for Sean.
I have also been selling super yummy bags of Sean's Sweet-n-Salty Strolling Snacks to fund raise for the event. I hope to get another batch done to bring to the walk as well.
Hope you are all having a good Monday!
Doug, Sean and I had the honor of hearing Karen speak at the National Down Syndrome Congress convention this past August. She is an inspiring speaker and amazing individual. I was moved to tears hearing her talk at the convention and seeing her reach her goal in Lake Tahoe brought me to tears again. She truly is leading the way to the future for my son and all individuals with Down syndrome! At 29 years old, she has a college degree, is a busy spokesperson for her non-profit group and, obviously, an incredible athlete.
As a person who embarrassingly dog paddles her way around the 5' section of a pool, I can't help but be in awe of Karen. What this article left out, is the fact that only 10 other people have been known to swim this strenuous stretch across the lake. Ever.
As Karen said at the convention, "We can make our dreams come true. I believe in you. Together we CAN do it!"