Merry Christmas

Merry Christmas everyone! We would like to wish blessings and peace to each of you.

I hope everyone is safe and warm this cold Christmas Evening. We are in the middle of a blizzard. We have about a foot of snow on the ground with high winds and it is not supposed to stop until some time tomorrow evening. I went out to scoop around the furnace and the drift right out the back door was up to my shoulder. So far we have been lucky and have not lost power. Others have not been so lucky. We are definately counting our blessings, that we have plenty of food and heat.
Grandpa taught Ben a new trick recently. While I am happy that Ben learned somthing new and that he picked it up so quickly, I am not thrilled with what it is. Grandpa taught Ben to pull his finger. Now Ben tries to pull everyones finger and makes a lovely raspberry sound every time he does it. Ben got a late nap the other day and instead of settling down to go to bed at 11:30 at night, he kept sitting up, pulling my finger and then he would laugh and laugh. While it was cute, it was not that cute at 11:30 at night. Grandpa's in trouble.

Here is a video of Ben pulling my finger.

Glad Last week is over

Last week was a very bad week for me.

It started off Monday when we had a light dusting of snow. Schedules changed and Andi needed to leave with Ben right when I got to day-care. When I pulled up I saw her car was running, and since I was just going to move Ben from one car to another, I left my van running too.

I never leave my van running. Turns out for good reason.

I went to step out on the snow and must have grabbed my door for support in case it was slick. I shut my door and went to open Ben's door, but it was locked. I went back to open my door, but it was now locked too. Great.

Now I remember why I always turn off my van, and pull the keys when I stop somewhere. When we got the van I had them program it so that all the doors automatically unlocked when I stop the van and open my door.

I ran inside and announced to Andi that she better make the call to say she would be late, as I just locked Ben in a running car that was now blocking her car in the driveway. At least the heat was on. I immediately called Randy to see if he could come from work to unlock the door. I was lucky he answered the phone, because I had forgotten he was at a class that day a good 45 minutes away. He suggested I call the police. Great!

So I called them and the said they would send someone out. Meanwhile, Ben is just hanging out in the car. I was playing peekaboo with him through the window. He thought this was a lot of fun.
About 20 minutes later a tow truck came and the very nice gentleman put what looked like 2 small blood pressure cuffs in my window, pumped them up until he could he could slide his tool that looked like a small dog catching leash and simply pulled up the lock. Wow that was easy.
Certainly an eye opener! Remind me to never leave anything valuable locked in my car (especially not my precious baby boy). I asked what I owed him and he said they don't charge when there is a child locked in the car. Wow! that was nice. Unfortunately he got away before I figured out who he worked for. I would definitely call his company again if I needed them, and would have liked to send them a tray of cookies or something. Thank you mystery tow truck man.

Then the nice police officer showed up to investigate what happened and to make sure it was not an abuse situation. I think he actually chuckled when I told him what happened. Thank you for doing your job and making sure my baby was safe.

I went to work, and actually made it pretty much on time. However I don't think I calmed down until about Thursday.

The rest of Monday way pretty uneventful. But that night it snowed some more. They called off school on Tuesday, so I volunteered to stay home with the boys and work from home. It was then that I figured out that some of my testing had to be done by Wednesday. With the forecast calling for yet more snow and high winds, I knew I would not be able to get to the office anytime soon, so I started at it from home. Luckily I was able to get quite a bit done, while serving as a referee between the big boys fighting over the play station, and trying to keep Ben out of all the drawers that don't have child locks on them yet. It is amazing how entertaining a big box of paper that needs to be shredded can be to a toddler.

We ended getting between 10 to 14 inches of snow with lots of drifting. School was canceled for 3 days so I was home with the boys. Randy had to stay home Wednesday too. Early Thursday morning Ben woke up about 3 am all stuffed up, wheezing horribly and barking like a dog. I turned the shower on to try to loosen him up with the steam, but it did not do much good. Ended up sleeping with him in the recliner. Randy got up and got ready to leave about the time Ben spiked a fever. I told Randy, I would try to get a late appointment at the Dr. but he would have to come back with the truck to get us if the plows did not come by.

The plows did not come by, so Randy did have to come get us. It turned out Ben has a sinus infection and an upper respiratory infection. Then I made Randy take us out shopping and to dinner since we were finally out of the house. Overall being snowed in was not bad. I wished I would have gotten more things put away at the new house, but between work and a sick baby, not much got done. I have next week off, so hopefully I can more things moved and organized, because right now it seems everything that I need is at the wrong house.

Ben helped the moving effort by putting himself in this box. He had a lot of fun getting in and out of it.

So far yesterday was not bad. We got to enjoy the school Christmas concert last night and got to hear John play with his band for the first time. He really is a good drummer.

Lets hope the rest of this week goes much better than last week.

Ben is walking!!

Ben is walking! OK. It really is more of a waddle, but he is finally out of the crawling position a good share of the time. It really started the Friday after Thanksgiving when he decided he wanted to stand more than crawl. He has been cruising for some time now, and letting go for a step or two, but it had never been more than that. Not anymore. He can go the entire length of the living room. He will still drop to the floor if he wants to get somewhere fast, and he sure can crawl fast. He must have grown a bit too, as he keeps getting a hold of things that I thought were safely out of reach. It is great to see him developing, but at the same time I miss my sweet little baby that rarely got into trouble. His PT said he was doing so well me may be able to go from once a month to once every 2-3 months. It is very exciting.

We started sleeping across the road on Friday. There is still plenty to move, and I only have about 1/2 of my clothes moved and am already out of room. Now I know why my Mom had 1/2 of my closet filled, plus two more when I was growning up in that house. There really is not much room in the master bedroom closet. That plus Randy and I have never had to share a room to put our clothes in before. He always got the closet and dresser in our room and I have always had to use another bedroom and dresser, in both of our previous houses. Going to have to start getting creative on where to put things to get it all to fit. I have already gotten rid of a good share of extra clothes.

Got the Playstation and TV moved yesterday in the snow. The boys are loving it.

Signing times

We have been using signs sporadically with Ben for over a year now. He has a few signs, but does not use them very regularly. Some of his signs include: more, all done, eat, milk, night night, out and he waves hi and bye.

This morning John was eating a breakfast bar, and he announced with excitement "I think Ben is signing cookie".

Since the time change Ben has been getting up earlier, before I get a chance to shower. To keep him occupied while I get ready, I have been putting him in his playpen and then turn on the Signing times video we have (volume 3 Everyday signs).

The first few days he did not really watch it and just played with his toys. The next few days he would glace at it occasionally.

Lately he has been standing up watching the video and jabbering to the TV. This morning when I turned it on he got very excited and started clapping. (He has not seen it for a few days. )

When I was done with my shower, the DVD happened to be on cookie. I said "Ben can you say cookie?" And sure enough he made a fist with one hand and tapped it on the other hand. It was not perfect, but it sure was close. I was amazed. Then the DVD moved to cereal, and when I asked him to sign cereal, he moved his hand under his chin. Again not perfect, but close enough for me.

I thought that he had been pointing more and trying to use gestures, in an attempt to communicate with me. But I was not sure what he was trying to say. It did not hit me that he would be picking up the signs from the DVD that quickly. I need to pay more attention to the show it to find outwhat all the signs are that he is learning. It sounds like Ben will be getting volumes 1 and 2 for Christmas too. It is so exciting to see him learning signs.

So I think John was right. Ben was signing cookie when he saw his big brother eating a breakfast bar. Way to go Ben!

So Far Behind

Sorry it has been so long since I posted. Been busily trying to move, keep up with everything else and stay sane at the same time.

Here is what has been going on.

Randy has been sick all weekend and the weather has been absolutely beautiful. It would have been the perfect time to move the big stuff, but it was not to be. Unfortunately, I think he might have the flu. Hopefully, he will start feeling better soon, and no one else in the house will get it. He was happy that there was a lot of good football to watch on TV this weekend.

I have been trying to get ready for the Holiday Extravaganza Craft Fair on the Saturday after Thanksgiving at Flying Wheels Roller Skating rink in Elmwood. Lots of stuff to make. We are also planning a bead night in a couple weeks for the DSAF to make Down syndrome awareness bracelets. Here is a picture of one of the styles. This style has 21 pearl beads representing the 21st chromosome and 3 cats eye beads representing the 3 copies of this chromosome. They each come with a card explaining the meaning of the number of beads and a poem.

I ordered supplies and have enough to make 50 bracelets with awareness ribbons and another 50 without. Not sure what the demand will be so I did not want to order too many supplies. We can always order a few more ribbons if needed.

Randy was trying to help with the laundry this weekend and accidentally washed my phone. He dried it also. There were no signs of life. They were able to hook up one of my old phones today, so I am back in business. If you gave me your number recently, I don't have it any more. Sorry!

John is done with football and is eager for basketball to start. He is doing well in school but is not too keen on reading to earn PlayStation time. In fact he even turned down money for doing extra chores this weekend in favor of PlayStation time.

Noah is also doing well in school and is enjoying his first year of cub scouts. He can't wait until next year when he can start basketball too. He also enjoys PlayStation.

Ben is so close to walking. He is cruising along everything, is able to stand up in the middle of the room without pulling up on anything, flies across the room with his push toy and has taken a few steps on his own.

Here are a few belated pictures of Halloween. John felt he was too old and was not going to go. But when we told him he he could not stay home alone, he threw on Randy's old bowling shirt so he could get some candy too. Noah was Darth Vader without a mask and Ben was a little Dinosaur.

Trick or treating is hard work!

Ben's Song of Love

A while back I got a form from our Service Coordinator about a foundation called Songs of Love. This foundation is for children facing life threatening illness or lifelong disabilities. They write, record and mail you a song on CD including personalized content made just for your child.
You can go directly to their website by clicking here.

Last week there was a funny little envelope in the mailbox and sure enough, it was Ben's song.
We were so excited. It is just the cutest song. Here is a video of him and his song. John and Noah make an apperance also. Unfortunately it is hard to watch since he dancing in his bouncer. You might want to just listen.

Capital City Buddy Walk

Saturday was the 8th Annual Capital City Buddy Walk. It was a chilly morning, but we all wore lots of layers to keep warm. It was a fun day, and thanks to some pledges we received this week, our team has raised over $900 for the Down syndrome Association for Families of Nebraska. Thank you to everyone who donated to Ben's Brigade!
We had 19 people walk with Ben's Brigade this year. It was a fun morning filled with lots of activities for the kids, food, and games. We all warmed up a bit during the walk. I told the kids we could cut over to the play ground instead of following the trail the last 50 yards and missed out on getting stickers and giant cookies. Sorry that was my fault! We did end up finding the stickers that got us in to the Children's Museum free that day after lunch. Then we all came home and took a much needed nap. Well at least Ben and I did.

Here are a few pictures from the day.

Ben ready to walk.


Most of our group, but where are the Clymer's?


Here they are.


Aunt Shannon, Why are we out in the cold?


Uncle Steve, keep me warm!

Thank you for all your support!

Down Syndrome Awareness Month

Today starts the beginning of national Down syndrome awareness month. So I thought I would start with a few facts about Down syndrome.
-Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
-Down syndrome is the most commonly occurring chromosomal condition. One in every 733 babies is born with Down syndrome.
-There are more than 400,000 people living with Down syndrome in the United States.
Facts from the National Down Syndrome Society.

Buddy Walk October 3rd

The Buddy Walk is less than a week away, and we are all getting very excited. So far our team, Ben's Brigade, has 21 walkers and has raised just over $700 for the Down syndrome Association for Familes of Nebraska. We are so blessed to have such great support from our family and friends.

There is still time to donate and/or register. Go to dsafnebraska.org for more details.

We also paid for a registration for Elmwood Murdock School, so students, teachers and thier families can come walk with us too. We need to have a total count in by September 30th, so if you can join us on October 3rd, please call me or the office at school to get signed up. Don't for get to wear your Knights attire!

We will meet at Antelope Park (near 30th and A) just east of the barrier free playground between 8:00 and 9:30. Look for Ben's stroller with a Ben's Brigade flag flying from it. There will be lots of fun activites for the kids, food, plus a teriffic raffle . The walk starts at 9:30. After the walk you will get a sticker that will get you in to the Children's Museum free for the rest of the day.

So far the it sounds like the weather will cooperate and it will be a beautiful day. We hope you can join us!

Thanks for all your support.

Angie

18 months old!

Ben is 18 months old today. It is hard to believe that time goes so quickly. At first we were worried about Ben being behind and all the things he might not be able to do. But now I don’t worry so much. Ben is learning - just at his own pace. Can he do everything his peers can? Well no. But there are plenty of things he can do. Here are a few.

-Can crawl anywhere he wants to, and crawl fast if you are coming after him.

-Eats like a horse.

-Is drinking soy milk from a cup with a straw and is doing pretty good.

-Loves his thumb.

-Sleeps great.

-Loves to take a bath and play in the water.

-Cruises along the sofa, table and any other surface he can pull up on.

-Likes to pull up on the door or window.

-Loves to horse around with his big brothers.

-Signs all done, bath, more, and out.

-Waves hi and bye.

-Gives kisses (watch out for that tongue!)

-Loves to sway and dance to music.

-Likes to turn on the music on his crib toy, even if it is 4:00 in the morning.

-Communicates very clearly that if you have food you will be sharing some with him.

-Loves to have books read to him.

-Throws them on the floor when you say "the end".

-Can not stand to have his blocks, books or toys put away neatly in their containers.

-Throws his toys over his shoulder when he is done with them.

-Throws his cup and spoon over the edge of the high chair after every drink or bite.

-Sees himself in the mirror and says "Ba".

-Can reach things on the dining room table, that I thought for sure were out of his reach.

-Is very curious about his surroundings and likes to explore.

-Loves to clap for himself and for others.

-Has the most precious little belly laugh.

-Is a total flirt.

-Can melt your heart with his smile.

-Has been an inspiration to our whole family.

Capital City Buddy Walk

This is Ben .
It's time again to raise money for the Down Syndrome Awareness in Lincoln.

How can you help? Many different ways! You can donate on-line by going to Ben's Brigade team page by clicking here. You can donate by check made payable to DSAF of Nebraska and send it to The Willey Family (email me @ awilley1@yahoo.com if you need the address). But the best way to show your support, is to register and come walk with us! Our team name is Ben’s Brigade. My family would love to see you there! To register, click here. Be sure to register by September 20th to get a free T-shirt with your paid registration!

The walk is 1 mile around the Children’s Zoo but there will be so much more than just the walk! I know they have a lot of fun stuff planned for the kids! Click here to see the brochure.

Thanks for reading. Thanks for donating. Thanks for loving me for me!

Love,
Ben
Randy, Angie, John and Noah Willey

Hand, Foot and Mouth

Last week Ben crawled into the bathroom and just as I rounded the corner to get him, he fell into the tub. He did not hit hard, and cried just a little, but soon after I noticed a red spot on his tongue. I figured he bit his tongue, since it is usually sticking out anyway, and did not think much of it after that.

The next day, Alyce and I were laying tile on the kitchen counters, and needed to make an unexpected trip to Lincoln for more supplies. (That is a whole other story, but I will not tell it here.) While at the store I noticed what looked like a small white head in the spot on Ben's tongue where the red mark had been. Along with it were lots more little white heads on the front of his tongue, along with a few more toward the back of his tongue.

Time to call the Dr.

While it was hard to diagnose over the phone, they suggested it must be hand, foot and mouth, or a similar virus. Either way, they don't treat it so we were to just watch it closely and give meds for pain as needed.

At the time he was just slightly whiny and clingy, so I did not worry much.

Boy did that change over the weekend. Those sores in his mouth must have really hurt. He stopped nursing and drinking, did not want to eat anything he had to chew, and just sat and cried for 5 -10 minutes at a time, especially when his pain meds wore off. My happy go lucky baby was gone.

Looking back, it really did not last long and he is now back to his happy self, but I was worried quite a few times that something major was wrong, by the way he carrying on.

Luckily I already had the week off of work for vacation, and we were able to get the counter tops done in spite of the clingy baby. Thank goodness for the backpack carrier.

School started on Monday in our beautifully newly remodeled school. So far I think both older boys are enjoying it.

Branson Vacation

We decided to go on one last quick vacation because we had some time share points to use up. School starts late for us, due to the construction, so it was the perfect time to go. We went down to Branson on Wednesday and came back on Sunday. We are really not into the shows down there, but go to get away, shop and so the boys can swim.

One place we enjoyed was Silver Dollar City. It was their last summer ride day, and most of the old-time craft booths were closed, but all the rides were open. The boys were fine with that, since they really only wanted to ride the rides anyway. There were basically no lines, and the boys got to ride multiple times if they wanted. One of their favorites was the giant barn swing. Here is a picture of the boys and Randy on it.


Usually Randy and the boys would go on the ride first, while I stayed with Ben. Then the boys and I would go on it. I chose not to go on this one. This was the only time Randy went on it. They did get me on a couple of roller coasters. I learned that I do not like the kind of roller coaster that just has a bar that goes across your lap. It totally feels like you are going to fall out. Give me the good old fashion shoulder bars any day. At least that gives you something to hold on to.

At the end of the day we went on the water rides. True to the warning signs we did get very wet. Why is it that the person who wants to get wet the least always manages to get wet the most? Here are some more pictures from Silver Dollar City.


The boys at the entrance.


Randy, John and Noah on a water ride.


How the boys felt every time I said, "Let's stop at this craft mall".


The giant chair.

The condo where we stay also has a decent indoor pool. The boys had fun swimming and playing with some of the other guests. However, we did learn a few very important lessons.
1. Babies who like beans, love bean burritos from Taco Bell.
2. Sometimes waiting a 1/2 hour before swimming is not long enough.
3. Don't let a baby swallow too much pool water.
4. Re fried beans will float in a pool.

That being said, Ben loves to swim. He kicked and squealed and splashed and wanted back in after we got out.

Another highlight of the trip was the Osceola Cheese Factory. We stopped on the way down and the way back to sample and purchase cheese. There were many different kinds of cheese and it was fun trying them to find our favorites.

On the way back through Kansas City we got to see the Royals and Twins baseball game. It was the first visit to a major league baseball stadium for the boys. They thought it was pretty neat. Fortunately our seats were in the shade, which was great for Ben, but bad for boys hoping to catch foul balls. We were cheering for the Twins who ended up winning easily, and had 2 home runs in the same inning. It was pretty cool.

We are home this week getting ready to move, and preparing for school to start. Less than a week left and it is back to the old routine. I am looking forward to it.

County Fair

Last week was our county fair. We each took a few items to be judged. Randy took some photos, I took photos, crochet, and crafts. John took photos, cooking, crafts in both 4-H and open class. Noah took photos and cooking as a clover kid in 4-H, and photos in open class. We got ribbons all over the board, from white to purple. It was a lot of fun.
John's muffins were chosen to go to the state fair. They were a zucchini dill muffin. The squash bugs are threatening the zucchini plants in the garden. Hopefully I can keep the plants alive until the 27th when we have to have the new batch of muffins baked to take to the State Fair.


Here is John singing with the Cass County Creative Cats 4-H club. Noah is in the back ground. Back in my day it was called a song contest and everybody sang. Now it is called a Performing arts contest and most all the other groups danced or lip synced. We were the only ones that sang. Our group did "Kids of the Future" of by the Jonas brothers. Each kid dressed up as a profession that they might want to be in the future. We only practiced for a couple of weeks before, and they were not very polished. Plus they only had one microphone, and we had planned on two so we had to make some quick last minute adjustments, and it was hard to hear them. They still got a blue ribbon, which was excellent for the first try.


Noah took this picture to enter in the special contest for next year's fair. Pictures need to represent the title "Meet Me at the Fair"


This will most likely be my entry.


Ben got in on the fun too, and enjoyed the merry go round.


Here is a picture of John getting ready to go on the Round-up. Not a ride you would ever see me on. Noah went on it too a bit later. He was scared at first but really enjoyed it in the end. Overall we had a great time at the fair.

Slow Down Mommy

This morning I woke up late.

Got my shower, checked email, ate a banana, got the big boys up and going, fixed my hair, and went into get dressed. My clothes are in Ben's room so this always wakes him up.

While I was getting dressed, we were working on his signs. I showed him out, eat, milk and he would just smile and wave at me.

When I would get close to his crib he would put his arms out for me to pick him up. I was finally done and able to grab him, and was signing eat and milk at the same time since we were going to have to eat fairly quickly to get out the door on time.

Ben threw both arms around my neck and gave me the biggest hug ever, as if to say "slow down Mommy, I don't have to eat just yet, just give me some loves first". Then he patted my back. I stopped dead in my tracks and just took it all in. This was the first time that I definately recognized that Ben initiated a hug. There are times in the past that he has laid down on my sholder and patted my back with one hand, that I think might have been a hug, but this was obviously a hug. It was so great.

Needless to say, I was late to work today.

Near Miss

Last week Noah wanted to earn some Play Station time, so I told him he could help me go across the road and gather the trash. The trash was kind of smelly, so I decided to just throw it in the back of our truck, which we keep over there, instead of putting it in the back of my van. As I drove up to our drive to drop it off, the puppy was there barking and jumping and it hit me that the smelly trash bags might attract some scavengers. So instead of stopping at the end of the drive, I pulled up to the cement in front of the garage and ran in to get some twist ties. I told Noah I would be right back and left the truck running.

I bopped into the living room to check on Ben who was sleeping, went back to the kitchen to grab a couple of twist ties, and headed for the door. Just as I put my hand on the back door knob and there was a big noise that sounded like pop cans being crushed.

I opened the door and was surprised to see the truck in the garage. Noah was behind the wheel with eyes as big as saucers. The truck was still moving forward slightly. Lucking he was not tall enough to actually reach the gas, so he was just idling forward and all the stuff at the front of the garage, like the refrigerator, a old table, cases of pop, garden tools, the gas grill, etc. stopped his forward movement. I was able to jump in and stop it from doing any more damage. Luckily only the old table and one case of pop were destroyed in Noah's first driving experience.

Now, I know I should never have left Noah alone in a running vehicle. However, with working on the other house, and stopping at one place or the other for just a second to grab something I forgot, I have been doing it a lot lately, and Noah had never even made a move to try to get in the front seat. But my brother and family were back the first couple weeks of July and he was teaching the kids how to drive a 4 wheeler, and Noah must have wanted to keep up his driving skills. He claims that he did not mean to put it in gear, and accidentally pulled down on the gear shift while trying to climb in the front seat to pretend to drive. But I am not sure how he could have done that and still stepped on the brake to get it in gear.

Noah knew he was in big trouble, but it did not hit him until he realized that lost Play station time instead of earning it. Then the tears started to roll.

We are just so greatful that he was not hurt and no real property damage occurred. Noah definatley had his guardian angel with him that day as there were so many things that could have gone wrong. Like the propane tank on the grill and the air bag that could have deployed. We just thank God that he is OK. And as a bonus, I don't think he will try driving again for a long, long time.

Happy Birthday Noah and other updates

The Birthday Boy.

Friday the 10th we celebrated Noah's 7 Birthday by going to the Flying Wheels Fun Center in Elmwood. We had a blast. I was especially glad that Ben got to go around a few times in his stroller, because that meant I had something to hold on to, so I did not fall down. Noah was one of the winners of the air guitar contest, and really enjoyed doing the limbo. But the highlight of the night was when everyone took off their skated and played dodge ball. Noah and John were right out there with the high school kids catching and throwing balls. They loved it.
Below are some pictures and there are a few more picutres on the Elmwood Website this week. You can see them by clicking here. They are about half way down the page and unfortunatley Julie had to get me in with a cute picture of Ben.

We also got the thyroid tests back for Ben. All three tests were within normal levels. Yeah. Hopefully we won't have to do that one again for a while.

We also got to go to Cedar Creek this weekend to celebrate my Uncle's 65th birthday. My brother and family were still here and all the cousins had fun playing with their extended family.



John playing the air guitar.


Noah rocking out.


Are we going to play the dice game or do air guitars?


Ben having fun at the roller rink too.

Blood Draw Update

I took baby Ben to the hospital last week to get his blood re-drawn. After getting checked in and waiting, the lady at the lab came out and asked very nicely if it would be OK if she just did a finger poke.

Are you kidding me? I am sure I stared at her blankly as the steam was coming out of my ears for a moment.

I said that would be just fine, but asked her to please double check to make sure she would get enough blood from a finger poke for the TSH test. I had been told at Children's that the TSH test required more blood, so a finger poke would not be sufficient. She came back and said that a finger poke would be fine.

She got two small vials out of the first finger she poked, and only after she poked and squeezed the second finger did Ben start with the scrunchie face. There was maybe 30 seconds of crying this time, and at no time did he stop breathing.

I feel so bad now for not insisting on a finger poke in the first place. It is definately not a mistake I will make again in the future.

Sorry Ben! Mommy is still learing how to be a good advocate for you.

Blood draw trama

At Ben's 12 month appointment they drew some blood to check his thyroid levels. This is pretty much a standard test for kiddos with Ds. After the results came back, we were told his levels were just barley high, so they were not going to treat him, but we should see an Endocrinologist.
The appointment was scheduled back in March and we could not get in until yesterday.
We went to the office, did the normal checks and when the Dr. came in he asked why we were there. I thought the question a bit odd, but after further discussion, I was told that they did not have a copy of the labs, and asked if I remembered what the numbers were. Yeah right! So we chatted a bit more and the decision was made to draw blood and do the labs over.

The Dr left and to come back a couple minutes later stating that he did find the lab results and wondered again why I was referred to him. Apparently the number had been 6.9 at 6 months and it went down to 6.18 at a year. (Anything over 6 is considered high for this particular test). I was shocked to hear this since my Dr's office had called me after the 6 month tests and told me everything was normal. Obviously not.
I was told to wait and they would tell me where to go to get the blood draw. I was worried that we would have to go somewhere else entirely to get the draw, but soon a lady came and led me to a room on the other side of the office to do the draw. She got every thing ready and called in for backup to help hold Ben. I told her that I was a hard draw but she seemed pretty confidant.

Unfortunately she poked around on his left side until the vein blew. Then on the right side she just dug around so long, that he ended up crying so hard that he could not really breath. I asked if I could pick him up once just to calm him down but was told they were almost done. Nice. So she announced that they were done because he was just too upset and that I would have to come back or go somewhere else to get his blood drawn. Extra Nice. I asked if they could do a finger poke like they had done before, but was told they needed too much blood ant it would take to long.

We are going to a new pediatrician this week anyway for his 15 month appointment. Hopefully his arm will be healed enough to have them draw his blood.

This was a totally traumatic experience for both of us. I don't think I have ever seen my happy baby cry that hard. He was still having "after shocks" in the car after we left. I felt so bad for him. By the time we got to therapy he was OK, but he was pretty clingy for the rest of the night. Hopefully the next time will be better.

The Scrunchie Face

Ben has the cutest little face he makes when he is getting tired and whiny late at night, or when something is going on that he does not like, that we have named the scrunchie face. He was making it the other night so I decided to get the camera out to capture it. As soon as he saw the camera the little stinker started to smile. So I took a picture of that too. However the smiles did not last long and I got all the steps that lead up to the scrunchie face. Here is how it develops.

My Boys

My baby is finally starting to crawl on his knees. Yeah! Last night I sat him on the floor, he trasitioned to his knees, then crawled on his knees to a toy, and sat down to play with it. Randy and I were so excited. Ben was excited too and gave himself a big clap. He is still army crawling a little bit, but not as much as before. Maybe I should not be so excited, becasue this means that he will be able to go faster, and will be getting into more things. Here is a picture of Ben at the park enjoying the swing.












While it is true that kids grow up too fast, my Noah is trying to speed it up even more. Noah is going to be 7 in a few short weeks. The crazy thing is, that the silly boy has convinced himself that he is going to be 8. I keep telling him that he was born in 2002 and therefore can only be 7, but he argues with me that he was really born in 2001. He is big for his age and towers over many in his class, even though he is one of the youngest. He is also very athletic and has been playing sports with his older brother since he could walk. I don't know what to do with the boy. Here is a picutre of him at the astronaut museum and a video of him batting.




John is enjoying baseball this summer too. He is also busy taking care of Bailey, doing some summer school work, and working on 4'H projects. Below is a video of him batting.

Sadness

This weekend our community was hit with more tragedy. A 15 year old, his father, and step-Mom were all killed in a car accident. His 10 year old little sister is in the hospital with very serious injuries, while his 19 month old step-sister survived in a car seat. This is the 4th teenage death from a car accident in less than a year for our small community. Please pray for the all the families involved.

Baby Idol Results

This morning they announced the results of the Baby Idol competition. Unfortunately, Ben did not win. But we really had fun this week campaigning for him. Thanks to everyone who voted.

We have a busy day of painting ahead of us. My goal is to get at least 2 bedrooms and 1 bathroom painted this weekend. If we can get more than that done, it would be a bonus.

Ben is a Baby Idol Finalist

A few weeks ago I heard about a Baby Idol contest on the radio where they were looking for pictures of cute babies. I thought to my self - "Hey.. I have a cute baby, maybe I should enter one of his picutres."
So I found one of my favorites and emailed it away. And then forgot completely about it.

Yesterday on the way home from John's game, I happened to be listing to the very same raido station, and they mentioned the Baby Idol contest. When I submitted the photo, they sent a confirmation email, but I had not heard anyhing else, so I figured he did not get picked. As soon as I got home, I got on line and was shocked to learn that Ben had indeed been chosen as one of the 12 Baby Idol finalists. The voting had already begun and will continue until Thurday May 21st at 5:00. Only one vote per person, per day is allowed.

To link to the B107.3 website click here

It is awesome that Ben was chosen. I don't think they have any idea that they have a baby with Down Syndrome in the top 12. In some pictures it is more obvious than in others, but not so much in the one I sent in. Of course we think he was cute in all the pictures. He has a smile that just melts your heart, and he gives it away so freely.

Ben has the best outlook on life. He is happy to be where ever he is (so long as Mom is pretty close) Here is an example. Last week when we were on vacation, it started to rain. At the time we were headed to the putt-putt golf course, and the bigger boys were really bummed. We popped the back hatch on the van, and sat under it, to wait it out. Ben was in his stroller and while he was out of the rain for the most part, he could stick his arm out and "catch" the rain. The bigger boys were whinning and complaining, but Ben was laughing and giggling and just having the best time. It was just such a great example of making the best of the situation and enjoying the gifts you have been given.
Ben is that gift for us.

Florida Vacation

It is good to be home! It seems so cold. Had to turn on the heat last night to warm up the house. I think it was supposed to get down into the 30's last night. It is a far cry from the 80 and 90's we had last week in Florida. I don't think we ever made it to the pool before 8:00 pm on any day, and it never seemed that cold.

We arrived on Saturday, and found the hotel, got some supper, then went swimming.
On Sunday and Monday we drove out to Kennedy Space Center. Monday was the launch of Space Shuttle Atlantis that we watched from the Astronaut Hall of Fame. The boys got to meet and get an autograph from Astronaut Bob Springer. There were lots of people and it was very hot, but was a really awesome experience. Tuesday we all went to Aquatica, which is Sea World, water park. We went down some pretty scary slides. Very neat park, but we all got burned except Ben and Noah. Wednesday we went to Sea World. They have a new roller Coaster that hangs you face down. Randy and John went on it, and thought it was the best one of the whole trip. Thursday and Friday we went to Universal Studios. They had some very cool rides too!

Over all there sure were a lot of people at all the parks, and this is supposed to be their off season. Most of the time we only had to wait 20-30 minutes to get on a ride, so it wasn't too bad. I would hate to go when the wait times are 50-60 minutes for each ride.

Noah's baseball game for yesterday got rescheduled to today, so we are off to Syracuse. This will be the first game of the year for us.

Florida

The Good, the bad and the ugly.

Really good - The launch of the space shuttle Atlantis, Kennedy Space Center, the Marriott's Harbour Lake Resort, seeing friends from Elmwood amid thousands of people, traveling with a happy baby.

The bad - Toll booths, forgetting the cord to the camera so I can't down load any pictures of today's awesome sight, brothers who fight.

The Ugly - The Orlando Airport and waiting in very long lines, especially at Dollar Rent a car. Wow! what a nightmare! Very unfriendly, very poor customer service, barely spoke any English.

Looking forward to 5 more days of fun with the family.
Picture to follow.

Summer Vacation

It is going to be a long summer. School got out early this year due to the construction on the school building. The last day was Friday. The big boys started day-care at Son Shine Day-care at the Methodist church in town. The first day they were both up at 6:00 to take care of the dog and get ready. The last couple days it has been more of a chore to get them ready to go. It looks like the day-care has been doing a good job of coming up with fun things for them to do, but it really can't compete with going swimming and going on field trips like they used to do at their Lincoln day-care summer program.
Ben is still going to a home daycare in Lincoln for the summer. He has scared the heck out of us quite a few time lately, when he seems to choke when he eats. It is really strange in that he is crying, and obviously still breathing, but it is like he has something stuck in his throat, and is coughing and hacking. It usually ends with him throwing up a frothy version of what he ate, and then he seems fine. Yesterday it was peaches that were cut up very small. A couple weeks ago it was sweet potato. Not sure if it is just going down the wrong way, and just hurts, or what, but it is very scary. I am planning to ask the therapist today to look at the way he swallows, to see if there is an issue.
Getting ready to head to sunny Florida. Can't wait for vacation!

Remodeling

We have been working on remodeling my parents house in hopes of moving this summer. Real progress actually started this week. We now have a shower in the main bathroom, a fixed front faucet, a patched front step, and hopefully today we will have a good start at some new flooring in the dining and family room.
I do have to say that I HATE wall paper. I have 5 rooms of wallpaper to remove and while some is coming off very easily, so won't come off at all. My mother-in-law had a great idea that is really helping. She mixed warm water with fabric softener, and it really works good for getting the wall paper to release from the wall, in most of the spots.
Yesterday I also tried my hand at painting one of the kitchen counter tops. Rust-oleum has a new paint specially for counter tops, but it does not come in many colors. The counter tops were harvest gold before and I tried to paint them taupe. While the painting process went very well. I am not sure I like the color with the cabinets. I painted a sample on piece of drywall that came out of the bathroom and am going to try to sponge some different colors on to see if I can get a look I like better. We may still end up replacing them, but want to avoid the mess of it, if I can. Click on the picture below to see pictures of the painted counter top and new floor. I took the pictures with my phone, so they are not very good.

Drop Box

Talent Show

This is my first try at uploading a video. The following videos are of the boys singing at at this year's church talent show. Both boys picked Jonas Brother's songs. I am sorry that the video so bad, especially on John's. Hope this works!
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Ball Night and Bailey

Last week was the Annual Ball Night for our local Down syndrome support group. We got to touch base with a few of our new friends in that group, as well as meet a few new friends.

Also included in this post is a picture of our new puppy Bailey. We are not sure what to do with her, because she is contantly nipping at us. She really goes after Noah, to the point that he is scared of her. We really need to get her calmed down, or I am afraid she will have to go. Hopefully the weather will turn around so the boys can spend more time with her outside, and maybe she will calm down.