So Sweet

The other day Max had a piece of paper from a friend in his backpack. He gets notes and artwork a lot. But this one was SO sweet....

To Max
From Christopher

Then on the inside was a print out from the book Common Threads: Celebrating Life with Down syndrome.


Christopher wrote:
Max you are the best friend I could ever have. You are nice, friendly and a good friend.
Max I will always be your friend.

AWE! Isn't that so sweet?

A few days later one of Max's paras sent home a copy of some art she saw hanging in the hallway. The art is made by a 5th grader. It is a glittery snowflake with "my Dream" printed in the middle.
"My dream it to become a teacher and work with kids like little Max. I think it would be cool to make a difference in children's lifes. I would teach math, reading and spelling. And make them a success when they become little kindergardners."

I'm so glad that the kids love Max so much. I have don't understand why they do but it's good they do. Max doesn't talk much and has some behavior issues. But I guess his lovable side wins them over! He's a great snuggle bug and likes to give hugs, kisses, high fives, shake hands and say HI.

I took Max to the the school audiologist last week since he failed his hearing screen at school (he always does- it's the type of testing they do). The audiologist is in another school. We get there and she recognizes Max first thing. She said when she was at his school she was walking down the hall. Max saw her, stopped, said HI and put his hand out to shake hands.
He CAN be a sweetheart when HE wants to be!

Have a great weekend. We will be celebrating Christmas with half our family this weekend and then with the other half next weekend.

Oh the drama!

Sam is just a tad bit of a drama queen. Sam is also an artist. Or at least she uses enough paper and artsy supplies to be an artist. Even at school she creates masterpieces.

A couple of months ago she brought home a shoe box turned upside down with big pom-poms glued onto it. Apparently this was a dog. His name was Puffy. His puffies kept falling off so Sam taped them all on. She played with Puffy that night and maybe the next. After that nothing. I turned Puffy upside down and filled it with a bunch of Sam's other artwork that she left all over the table. And there Puffy sat, upside down filled with papers for weeks. I was tired of looking at it so I weeded through the papers (artwork!) and put most in the recycle bag of papers. I then stuffed Puffy in the trash. I made sure to bury him way down in there.

Has anyone ever tried to throw away a masterpiece that your child has made only later for them to find it in the trash!?? I have. Which is why I buried it. It worked. Puffy was gone. On a side note- Don't think I get away with throwing papers in the recycle bag without hearing about it. Sam will always ask me, "why did you throw that away?" I say I didn't throw it away (you know, cause technically I'm going to recycle it!). I bury everyone single one of her papers I throw in that bag!! And if I saved every single masterpiece she created our whole house would be stuffed full of paper.

Last week Sam came out of school with a half of an egg carton and construction paper glued to it in certain places. This was the birth of Birdie. She loved Birdie so much that she left him in the car for a week and completely forgot about him. Yesterday while cleaning some stuff out of the car I took Birdie out. I was THIS close to throwing him away. I instead put him by the garage door.

Yesterday after school Sam comes out with "Little Robot." This creature was made of 2 boxes, some yarn and who knows what else. As soon as we get in the car she noticed Birdie was missing. HOW? I don't know. She asks where Birdie is. I tell her he is at home. She made sure Little Robot had his own seat on the drive home. We get home and Little Robot and Birdie are introduced. They play together and decide to look for another friend. Guess who? Puffy. Sam is looking all over and finally asks me where Puffy is.
WHO?
The dog I made.
What dog?
You know, the one that had big fluffy things on him.

Then I realized what she was asking for. Doh!

Um, I'm not sure Sam.
Well, have you seen him?
Not lately.
Where is he?
I think he may have went to a farm so he could run and play.

I guess she knew what that meant cause she busted out crying!
You threw Puffy away??
(back pedaling) I don't know if I threw him away or not. Maybe he's around the house somewhere. Keep looking.
She was upset that I threw her Puffy away. I heard about it for about the next hour. I had her make a new Puffy. But it was not the real Puffy so obviously this Puffy will not fill the void.
She came crying to me that she missed Puffy. She never even got a picture of Puffy so that she could look at him again. The drama went on and on. I'm not sure she missed our real dog, Ralph, that much when we had to put him to sleep last year. It did take her a full month to realize he was no longer around. Seriously!

Hopefully she won't see the scarecrow or jelly fish I plan on throwing away today. I should probably just take those straight to the recycle drop off!

Merry Christmas

Hope everyone is having a great December so far.

I didn't use this as my Christmas card. The formatting would not fit correctly but I thought I would share it on here to wish all you a Merry Christmas!

Chance to win 2 cool prizes

I found a blog that is hoping to adopt a "little one" and is holding a fund-raiser. They are only $5000 away from being fully funded to adopt a little guy with Down syndrome. They are having a raffle of 2 prizes. One is a GPS and the other is a camcorder.

Not only is this couple hoping to get money for their adoption but they are also giving 20% of the money from this raffle to little Timothy. Timothy is on the Reece's Rainbow Angel tree and is such a darling looking little boy. I find myself gazing at him everyday as well has Joseph and Charlie.

Get your chance to win either a GPS or digital camcorder by chipping in $10 or more. If you donate $25 you get your name in the drawing 3 times instead of only once for $10. They are not many donations as of right now. This contest ends December 15th. GO help this family out along with sweet little Timothy and you may just get an awesome reward for it!!


PS- WOW-- I just went to RR to grab a picture of Timothy. He struggled to get his first donation on the Angel tree. Now he has $1015!! Amazing!

UPDATED to add: Since they have had a low response to this fundraiser they have decided to up the entry count. $10 gets you 3 entries and $25 gets you 10 entries. Then if you mention it on your own blog (let her know about it) then you get 1 additional entry.

Finally

Over Thanksgiving Sam didn't feel that well. She stayed home that following Monday and Tuesday. She perked up and acted fine. Thursday she went to sleep as soon as we got home from school. She slept the whole evening. She got sick that night so she stayed home Friday as well. Friday morning I get Max up and help him get ready. He would not even touch his breakfast. All he wanted was his Orange juice. But I knew something was up for him to turn down his pizza breakfast. Breakfast of champions, you know! I asked if his tummy hurt but any question i asked got an answer of no. I told him to go back to bed then. And he did! So I let stay home too. I wish I had known the night before he was sick because then I could have slept a little longer that morning! But anyway, he went upstairs, started watching TV and just laid on the couch. He started throwing up around 9 and continued the entire day. He stayed on the couch the whole day except for a brief 30 minute time period when he went on a hunt to find me. Oh and the time he move from the couch, away from towels and a barf bucket, out to the hallway and decided to leave a nice bit stain on the carpet. Sam stayed in her bed the entire day. They were both pretty sick.

Max was himself by Saturday. Yay! So his was a 24 hour thing. Sam was still sick over the weekend but started felling better Sunday evening. Alright- she can go to school Monday. Wrong. She got sick during the night. SO I kept her home Monday as well. She acted fine though.

Monday afternoon I had doctors appointments for all 4 kids to get flu shots (seasonal and/or H1N1). That is always SO much fun! not really. All 4 act as though we are about to decapitate them. After the appointment Max wanted to go to school again. He had about an hour left. So I took him back. crazy kid. Do you want to go home or go to school. what kid picks school? Max does I guess!

Ike fell asleep on the way to the doctors office. He slept for a little bit until I decided he needed to be woke up by me not some needle being jabbed into his leg. He then fell asleep after our McDonald's stop (which was right after the shots). He slept and slept. I dropped Max off at school and then went home. We went back out roughly30-45 minutes later to go get Max and Ike kept sleeping. I did the drive through pick up so I didn't have to get Ike out. We came home and Ike continued to sleep! He slept for 3 1/2-4 hours for a single nap! That shot must really have worn him out. He may not be feeling all that well either. He has had some pretty nasty diapers.

But as of right now, all 4 kids are healthy-Finally. 2 are still sleeping. The other 2 are at school. Yay! Now in another couple of hours or so I may not be able to say all 4 are healthy, but we'll see...

Updates since it's been awhile...

So it's been awhile since I last posted.

Hope everyone had a great Thanksgiving. We did. We spent it with family. The weather over the weekend was great. Now it's cold!! It's only getting colder today too.

Sam started not feeling well on Friday. She said her throat hurt. But since she tells me this every day of her life, I don't think much of it. You know, the boy who cried wolf! Then later she says her stomach hurts. She did finally start acting like she didn't feel well. She got a mild fever and slept some. Joe also got a fever and acted like he didn't feel well. He popped out of it though. Sam was still sick Monday morning. She started throwing up Monday morning as well. I took her to the doctor who thought it sounded like strep. Me too. The quick strep test said negative though. But that test only catches roughly 80% of the cases. So the doctor said she would not be surprised if the culture came back positive. That happened last time when Sam had strep and H1N1. The doctor gave us some antibiotics saying that she really thinks it's strep and the fact Sam looks like death (not her words but Sam did look pretty pathetic). I kept her home from school Tuesday as well so she could be on meds for 24 hours. On Tuesday though Sam acted perfectly healthy. She is at school today. And Holy cow- her teacher sends home a lot of homework!! (she sent it home with Max)

Last week we went to a pet store to kill some time while I got my oil changed and tires balanced/rotated. The kids love going to pet stores. However Ike is scared to death of parrots. I think this comes from the last time we went to a pet store that had a parrot hanging out. The bird stays by the entrance and sits on top of his cage. Joe was afriad to pass him on the way out. I was holding Ike and standing pretty close to the bird. I told Joe come on, the bird won't hurt you. Joe comes and right as Joe gets by him, the parrot squawks as loud as a parrot can squawk. Scared him and Ike to death!!

So the other day at the pet Ike would not go by the birds. He saw them, froze, cried and ran another way. He found a little cubby hole to hide in, which was in the middle of display of some boxes. I only found him because I could hear him whimper. The other kids were fine. They even got to hold a few parrots on their fingers. They thought that was pretty cool. We then petted some cats/kitties. Max was petting a little kitty and then called my name. (I was right by him). He pointed to the cat. I said yeah, the kitty is playing with you. The kitty was biting his finger. Well the kitty was biting HARD! Max was trying to tell me the cat was apparently trying to eat his finger. Max pulls his finger out and it's already bleeding pretty good. He starts crying. I try to let him see his finger because if he sees all the blood coming from his finger then the rest of his body will not be able to function. You know, because a cut finger or even a band-aid on your finger will make you limp and not able to walk right! So I ask an employee for a towel. I start cleaning up Max's finger and the employee comes back with a little cute puppy (Chihuahua). Within a few minutes Max had already forgotten about the kitty bite. His finger did look a little red and had some puss-looking spots on it the next day but it has healed nicely.

Ike is in love with Dora! All he ever wants to do is watch Dora. If you even try to watch something else on the TV, you will not be able to even hear it over Ike saying, "I want Dora!!" He also likes Diego. We have a Diego playset that he plays with. He will be getting more Diego stuff for Christmas. He will love it!

Joe is obsessed with the Wii. Basically Wario Land Shake it. He still likes Mario (from Super Mario Galaxy). I think my kids would all love the new Super Mario Bros game made for the Wii. However, they will not be getting it from me unless I find a great deal on it. I'm sure it will be in a used store within a few months.

I'm still in love with the 2 little boys on Reece's Rainbow and my husband still thinks I'm crazy. There have been a few amazing stories about different people adopting. Like THIS one. An eleven year old has raised over $30,000 in 2 weeks!! Her family will now be adopting a sweet little girl that is in need of a family. They are giving everything over $20,000 to another family trying to adopt. Their goal was to raise $20,000 in 8 (or was it 7?) days. Isn't that amazing!? Also, HERE is a site having an online auction right now trying to raise money to adopt another sweet little girl they 'committed' to just days before she was to be sent to a mental institution and never be able to be adopted. Her country has a rule about once a child is place in the institution they can never be adopted.

My computer that has given me SO many problems is being replaced. It was only about 2 months old and had already had 4 motherboard replacements, 2 hinge cover replacements and one new keyboard. The last time the motherboard was replaced it crashed again! The guy fixing it didn't know what to do. He is a hardware guy after-all, not software. I called Dell and they decided to just send me a new one. Apparently 4 motherboards in 2 months is excessive! It has been 10 'business days' since then and they are still in the process of building it. They try to find a refurbished one that matches or better than the original one. The one I have is a refurbished one and is a really good one. So if Dell can't find one that would meet that criteria within so many days they just build a new one. At least the way I understood it from Dell. So Hopefully soon I'll have my computer again. Although, once it gets here Pete will be swiping it. He wants to switch. He has decided he now wants 64 bit instead of 32. I really don't think he will like it but whatever. He had a 64 bit and returned it b/c he hated it so much. I really don't care either way. I will have to set up a new computer anyway. It stinks! It takes forever to get it the way you want it. But if I do take Petes I guess a lot of the software I want will already be on there. Thank God for Dell warranties!!

OK, so that was a long and general update. My 'old' computer just seems so slow now that i am used to my new one. We may head to the mall and play today... I need to drag Ike away from Dora and there is some stuff I want to buy there. Have a good rest of the week.

Help improve Down syndrome article

Just sharing this article that my hubby saw today while "working"....

From Fox News

Study Points to Possible Reversal of Down Syndrome

Thursday, November 19, 2009

Increasing the levels of a message-carrying chemical in the brain may help prevent some of the memory deficits in Down syndrome that hinder learning and make it hard for the brain to develop normally, U.S. researchers said on Wednesday.

They said mice with a rodent version of Down syndrome that were injected with drugs to increase levels of the neurotransmitter norepinephrine — which nerve cells use to communicate — showed improvements in their thinking ability.

The finding points to a new way of trying to improve some of the deficits seen in Down syndrome, which affects 5,000 newborns in the United States each year.

"If you intervene early enough, you will be able to help kids with Down syndrome to collect and modulate information," said Dr Ahmad Salehi of the Veterans Affairs Palo Alto Health Care System, whose study was published in the journal Science Translational Medicine.

"Theoretically, that could lead to an improvement in cognitive functions in these kids," Salehi, who worked on the study while at Stanford University School of Medicine, said in a statement.

Down syndrome occurs when a person has an extra copy of chromosome 21. At birth, children with Down syndrome are not developmentally delayed, but memory deficits linked with the disorder hinder normal brain development.

Salehi and colleagues simulated this in mice that had an extra copy of chromosome 16 that gave them mental disabilities that resemble problems seen in people with Down syndrome.

In the study, the researchers found that the mice with Down syndrome-like dysfunction had lower amounts of norepinephrine in the brain than normal mice. And this problem appeared to occur in a part of the brain called the locus coeruleus.

When this part of the brain broke down, the mice failed to exhibit normal behaviors. When placed in a strange cage, the genetically engineered mice did not build nests, something normal mice do.

But giving these mice drugs that boost levels of norepinephrine appeared to help. Within a few hours of getting the drugs, the mice built nests that were on par with those of normal mice.

Salehi said he was surprised to see the drug work so fast, but the team noted that the effects did not last long.

Some drugs already on the market for depression and attention deficit hyperactivity disorder target norepinephrine. Salehi said he hopes the findings will lead to new research on these drugs in people with Down syndrome.

Reece's Rainbow --Down syndrome adoption

It seems like everyone in the blog world is adopting. Ok, well not everyone but lots of people have or in the process of adopting a child. Most are through Reece's Rainbow. A great non-profit organization, started in 2004, to help with international adoption of children with Down syndrome. They also host "other angels" which are children that have other special needs instead of Down syndrome. It promotes awareness, funds and most importantly matches these kids with their forever families.

Right now they have their Christmas Angel Tree Project going on. It goes through the end of year. The goal is find families for the kids but also to help rise each child's grant to at least $1000 each. For $35 you help support a child and get a Christmas tree ornament with that child's picture on it.

I love reading about these families and their journey to adopt their new child or children. I encourage you go check out Reece's Rainbow. It has several links to adopting families, available children, and tons of useful information.

I have fallen in love with 2 little boys that are soon facing institutional life. They are listed under the most "at risk" category for boys. Right now they are already 5 years old.

They are Joseph

and Charlie

They are so cute. They are only about a month apart in age and are at the same orphanage. I'm guessing within the next year they will be transferred to a mental institution if not much sooner. Usually kids 'age-out' of the baby homes (orphange) between 4-6 years old. It depends on many things including the country and how much money the baby home has. Of course I am hoping and praying these little boys find forever families. Joseph has around a $1,400 grant including his Christmas tree grant and other donations. Charlie has around $1,000.

I would love for these cuties to belong to me but my husband thinks I'm crazy. I have their pictures hanging on my fridge.

Life in a mental institution in their country is no life at all. They are old buildings with very little funding to help run them. Some kids are tied to beds, they are fed very little and receive no physical love or even touch. Most of these cute little kids that go to the institution die within the first year. I can't even imagine a life like that. It's no life at all. It's all because they were born with an extra chromosome. The familes that give these kids up, saying they died at birth, have no idea what they are missing. Unconditional love for one.

Please help these kids anyway you can. Pray, donate, spread the word, or even better, adopt these cutie pies!


Reece's Rainbow

Halloween and pumpkins

Here is a post about halloween... only a few weeks late!

The kids love decorating pumpkins, that is until they have to clean the "guts" out! We stick the 'faces' on them and then closer to Halloween we cut out jack-o-lanterns.

Sam and her pumpkin

Max and his pumpkin

Joe and his pumpkin

Ike and his pumpkin

We carved them out Friday night. I expected me ending up doing all the work but they did pretty good this year. I did hear lots of complaints about how it's gross and dirty, etc.. I told them it had to be done if they wanted to cut a face into the pumpkin. Joe did great cleaning, digging right in. Sam also did great, although I got to hear about it all. Max, well, he did OK. He never digs his hand right in. Even this year he was scrapping seeds out with a spoon making sure his hand did not touch any of that pumpkin. Ike-- I did all of his. he helped some, but not much.

Joe digging out pumpkin guts

And to not bore you with all the details of pumpkin carving, here are the finished products.

Sam with her pumpkin

Max and his pumpkin.
"I dare you to get a picture of me without my tongue!!"
Seriously, I have about 8 or more of this pose, all with Max sticking out his tongue.

But I finally got one!
He did his own cutting this year. (explains the crazy face!) Pretty good I think.


Joe and his pumpkin

Ike and his pumpkin.
(Ike with a ring toss ring on his head!-- It's all the rage, you know!)

Finally Halloween night. We had 2 skeletons, 1 cat and 1 ghost.

After we got back the kids ate as much candy as possible.

Max passed out with a candy coma!!

Notice he picked out all the "good" candy. Smartiees, starburst and he already ate all the twizzlers. That is about all he will eat from the candy. Picky kid!

Walk formally known as Buddy...

This year our Buddy Walk was not called The Buddy Walk. It was called Step Up for Down Syndrome Walk.... Step Up Walk for short. I was told that there were around 10 walks called Step Up Walk this year. Basically because the Down Syndrome Society was wanting a lot of money this year so the local groups decided they wanted to keep more money in their local areas and somewhat joined together.

The Kansas City walk is one of the largest Down syndrome walks in the country. This year we had over 7,000 people walk/attend and so far over $370,000 raised!! This means that the KC walk was the biggest and most money raised in the country this year! WoW!!


The walk was at the end of October. October 24. It was rather chilly in the morning but warmed up nicely. The walk is from 9 until 1. There is lots of fun things for kids (bounce houses, climbing rock wall, ballon guys, face painting, a carnival ride or 2, etc...) and of course lunch.


We had our parents up for the walk and then my brother and his family came. Then from School there was our K teacher (Max and Sam both had her) and her husband, Max's old resource teacher and her 2 kids, Max's para and her family. His Pre-k teacher was signed up but had something come up and the last minute so she didn't make it. She came last year though!

It was a great day and here are a few photos of the day...
Max getting a free ride from daddy.

Sam decided she needed a free ride too. Chris, Max's para, carried Sam! muscle woman... I don't even do this for Sam! As you can tell, Sam enjoyed it!


Me and Ike... while he was awake.


He slept most the time in the wagon.


Joe figured he would try this too... He wasn't really sleeping though.

Hope everyone had a great October .... Down Syndrome Awareness month.