Peter - Carepage - August 23rd, 2008

BUDDY WALK 2008!

Team Peter Bear

Well, today was the BUDDY WALK and it was wonderful!! I was a little worried because the forecast called for clouds, fog and cooler temperatures in the morning. However, the sky was clear, a light breeze and warm temperatures - perfect for the walk!! There were tons of people and lots of activities. As a family we had been looking forward to the walk....of course, my kids really were looking forward to the activities and games - and they made out with quite the loot!
We were so excited to have friends join us. Last year Mindy joined us 5 months pregnant! She weathered the blazing heat while helping out with the boys. This year her husband Adam joined us as well as their little boy Thad! We were also joined by Paul and Lisa Roach and their four beautiful kids. Jack was beyond excited as he loves playing with their son John Paul....whom Jack called "Grand Paul" for a very long time! As we wrapped up the walk we were met my our friend Keith Dawson and his daughter Heather - they came all the way down from Denver to meet Peter! We also ran into several families we've met over the last year - and some folks we had only met through e-mail. So that was very exciting!

Thad, Adam & Mindy Younger with sleepy Peter and me









Thomas



John Paul


Peter had a good time. He was sleepy this morning - I think the teething is wearing him out. So he slept part of the walk, but enjoyed the second half! On the walk they had posters of the different kids with a little about them. We were so excited when we ran into Peter's sign around the 1 mile marker....I had not told the kids what I put in the submission - so they were excited to be mentioned in it. Thank you so much to all who donated to TEAM PETER BEAR!

To show how God blessed the walk today, the weather was perfect until we got home. The dark clouds appeared and we got some rain. The clouds were spectacular - the colors and shapes formed in such a way that I had never seen before. We were so in awe we stood out and took pictures until the rain drops fell!

To wrap up a wonderful day we enjoyed a wonderful dinner at the McHenry's. Wendy and Dave's daughter Sarah has DS. She is almost 18 and a senior in high school. She is a remarkable young lady - and big fan of the Jonas Brothers! It was a relaxing evening and so much what I needed - nice wine, good dinner and great conversation!

On a completely different note....Peter's teething is wearing him out - but he is showing some results for all his hard work - Peter now has one big front tooth! The second front top tooth looks like it is almost through - so we should have a toothy smile soon. He's also working on other teeth - his poor gums have become so swollen. The odd side effect is that he is now enjoying gumming food....so we hope that his enjoyment of gumming food will allow us to start moving away from puree food.

God bless,Catherine

Peter - Carepage - August 17th, 2008

WHAT A WEEKEND!




Oh my goodness....ever have one of those weekends where it feels like everything happens?? Well, Peter had one of those weekends - in a very good way. So let's hit the highlights!!
First, and all you chocolate-loving women out there will appreciate it (and men) - Peter LOVES brownies!! No baby switching in the hospital - he is my son. I am sure as soon as he learns to drink from a straw he will be downing Frappucinos with me - just like Tommy and Jack. And if he follows in Jack's footsteps at all he will learn to tell the nice ladies at Starbucks "ladies....I think I'm in the mood for a mocha"! Priceless!! Not only is exciting that Peter accepted a flavor and enjoyed it - but that he accepted a new texture which he gummed and then swallowed. He did the same with bits of bread. The light at the end of the tunnel of eating issues seems to be getting bigger. Since my home cooked baby food was a hit and miss with Peter - we have been single-handedly financing the baby food company on sweet potatoes and green bean jars. Yeah Peter!!

Second, Peter made huge strides in his mobility and attempts to pull/push up. Our family room has a ledge about 5-6 inches high into the kitchen. Not only did Peter partially pull up on it, he was able to push himself up and into the kitchen. Beware of the Peter Bear! This morning I found him in his crib holding on to the rail and trying to figure out how to pull up. While he hadn't figured out how to get on his knees, or the strength to get completely up, he had part of his upper body over the rail - so time to lower the mattress....how exciting!! And as if that weren't enough - Peter got up on all fours tonight and awful close to crawling on all fours. His legs knew what to do but his arms weren't there yet. And to make it even funnier, he kept his head down with the top resting on the floor so as to give himself extra support staying up....if he had moved forward he would have given himself rug burn on his forehead. Crawling, standing and walking suddenly seems much closer and that is so exciting! Maybe Peter will beat the odds and walk before his second birthday (we have till May)!

Last, but by no means least - Peter is no longer a scraggly haired baby - but now a respectible young little boy! Peter got a hair cut today. You know how most kids cry, scream and wiggle during the first dreaded yet highly anticipated first haircut? well, Peter wiggled but other than that was the picture of happiness. He wiggled around keeping his hair stylist Roberta on her feet, but he was laughing and smiling and doing his special scrunchy face. By the time she was done doing her magic Peter was transformed from a baby to a little boy. He lost his little curls at the nape of his neck - but he now looks so much like Michael, Jack and Tommy did at that age. I told him he's HOT! And he knows it!!

Hope to see you at the buddy walk on Saturday!!

Love,catherine

"I hear I am in for a little pampering today!....a TOTAL MAKE OVER!!"


"....oh yeah.... a boy like me deserves some serious loving....."


".....ahhhhh!!!!! what did I sign up for today??"



"....did I misunderstand 'prodded' for 'pampered'?? I'm so confused!"



"....uhhh....ahh.....starting to get it now....no pain no gain - a boy needs to be strong to become a MAN"




"...yep....I knew it....she knows I'm special!...after all my t-shirt did spell it out"




"DUDE - the mohawk is back!....stylin'!!"






"....I think I'm done - let's blow this joint..."






"so Sis - I'm I hot or what??!!"

BUDDY WALK 2008

Dear Friends and Family,

On Saturday, August 23, the Krause Family will be walking in the Colorado Springs Down Syndrome Assn Buddy Walk to show our support for our beloved Peter, and the more than 350,000 individuals with Down syndrome in the United States. We have signed up as TEAM PETER BEAR and want to do our part to make sure that each individual is given every opportunity to reach his or her full potential.

Every step we take, every dollar we raise, will help ensure that each individual with Down syndrome in the United States will be able to do just that. Last year alone, over $6.5 million dollars was raised nationwide for local and national education, research and advocacy programs.
We are asking you to Buddy Walk with us to make a difference for people with Down syndrome in our community.

I hope this link works for you:
https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=273488&lis=0&kntae273488=337D0E301DF047E9B513D93E6F738B9A&supId=229242189

If not you can copy and paste the following into your browser:
http://buddywalk.kintera.org/faf/r.asp?t=4&i=273488&u=273488-229242189&e=1846203547

See you at Buddy Walk 2008!

"Tropic Thunder" or tropical blunder?

Ever have one of those days where you just feel sad? Well, today is one of those days! I am sure most have you heard about the hoopla in the news about the new movie "Tropic Thunder" that opened today. There has been outrage by many organizations that support and represent people with intellectual disabilities. Letters, news bytes and protests at theatres. If you read the articles online and scroll down to the "comments" section people are heated on both sides of the fence. On one hand you have people advocating for people with disabilities, arguing that movies should not be aimed at hurting and name calling people who can't defend themselves. Personal accounts by mothers, sisters, brothers, etc that are standing up for their loved ones. On the other hand you've got people arguing that this country has become too politically correct, to grow up and accept the movie for what it is - a comedy. To trust that folks watching the movie know better than to use the derogatory comments made in it. Those that argue too much time is wasted on this argument when we should be focusing on our economy, the price of gas and the upcoming elections. I have not watched the movie, and honestly it is not chick-flick enough for me....but from what I have read it uses the name "retard" often to reference an intellectually disabled character. There are "phrases" being coined in marketing material including t-shirts that say "Full Retard", "Don't go full retard" and "Once upon a time ....there was a retard". Additionally the film referenced the intellectually impaired character as "moron", "moronical", "imbecile", and so on. So honestly I just sat here tonight getting sad.....sad that at the end of the day things are so complicated when they should be so simple. That yes, both sides of the fence have valid points to build their soap box on.....but that and the end of the day we have all become "cafeteria Americans". We pick and choose what this country stands for, and at the end of the day we have lost basic common sense. Yes, we have "freedom of speech" but we also have "liberty and justice for ALL" - and what about the "pursuit of happiness"? Today we live in a "me, me, me" world.....we often here "it's all about me!" or "what's in it for me?". And in our pursuit of our own freedom of speech, our own right to happiness, our own sense of justice we no longer think of what that means to others. I thank my parents for teaching me basic common sense as a child - I may not have used it all the time, but they tried! I remember my mother telling us over and over and over again "Never base your sense of humor on ridiculing or humiliating other people". Really what she was teaching us was RESPECT...how about that for an r-word we don't hear often any more - unless of course we are complaining that we don't get respect from others. What about respect for our fellow citizens? what about supporting them in their pursuit of happiness, justice and the American dream? What about saying "it is all about you" or "what can I do for you?". Let's face it - our individual pursuit of the American dream can be in stark conflict with someone else's pursuit. Ultimately there are told and untold boundaries. My right to bear arms doesn't mean I can go around killing people....even if it is part of my pursuit of happiness. My pursuit for wealth doesn't mean I loose sight of my civic and moral responsibility to others. My freedom of speech does not mean I go around calling people names. COMMON SENSE!! Today I thought about life....and the fact that our life consists of one choice after another. Speaking for myself I have made wise choices, lousy choices and a lot somewhere in-between. But at the end of the day, they were my choices and I will continue to try and make the right ones. John and I have often talked to our kids about choices. And today I thought about all the choices we don't have in life. I didn't choose to be born blonde, my brother didn't choose to loose his hair early (sorry Rog!), John didn't chose to be one of six kids, and neither did Peter chose to be chromosomally enhanced (i.e.. have Down syndrome). Alexandra didn't chose the freckles on her lips she says look like a mustache (please don't make fun of her!). Sometimes we find ourselves in situations we can't control...and some I can't imagine. I can't imagine what it is like for the African-American mother who's child comes home after being called the N-word at school, or the parent of an inter-racial child who struggles to explain who she is......but today, I do know what it is like to be the parent of a child that technically is a "full retard". I know what it is like to have people avoid me because Peter makes them uncomfortable. I know what it is like to walk through the store and have people try not to stare, but they do anyway - whisper under their breath or make down right stupid comments. I know what it is like to fear what world I am bringing my children into - each and every one of them. I am a mother who has had to fight the desire to strangle the living cr*p out of someone who disrespected or insulted my child in word or action. At that moment in time it was my pursuit of happiness - or so I thought - but beating up a 6 yr old boy who was teasing my 4 year old daughter was hardly applying the common sense my parents tried teaching me. Berating or belittling him technically fell in my "freedom of speech" although it could be argued it was "child abuse". Hmmmm.....another conflict. So guess what?? our rights, freedoms and choices are not just ours.....they impact everyone around us!! We are all connected by a tangled web we can not see. So the choices we have and the ones we don't still impact those around us - our actions, our words, our attitudes. So I am not sending this out to ask you to boycott a movie, or protest at a theatre - although that would be your right and I wouldn't stop you! What I am asking is that we all take a step back and look at the bigger picture. Let's lead our society by example - let's make the R word "respect" and not "retard". Let's create a next generation where my pursuit of the American dream doesn't have to conflict with your pursuit of the American dream because ultimately we use common sense, compassion and RESPECT!! catherine

*************************************************************************************
August 15th, 2008:
I'm back! And I do want to thank you for listening to me go on and on....no need to say more I hope. And for the record - my parents tried to instill common sense in me, but sometimes I lack it. John and I are trying to do it - and when all hell is breaking loose in the Krause house (as it does at times!), we think we are failing too! I didn't want anyone to feel that I was sitting on my high horse preaching from a spot of personal and parenting perfection....goodness knows we have a long way to go - but we are trying!
On to what this is really about....remember last year I waited until a couple of weeks before the Buddy Walk to register? Well this year I beat that and waited until a week before - AHH! The BUDDY WALK is next Saturday August 23rd. Below is some information about the Buddy Walk together with a link to our family home page for the walk. Please know that we understand with as tough as the economy is, that making a donation to the BUDDY WALK may not be easy - but we hope that you will join us. By just walking with us you are showing your support for Peter and all individuals with DS, bringing awareness to the community and hopefully just having a great time getting some exercise in. For families there are lots of activities - my kids made off with a loot last year from the raffles and different games. There is food, music and hopefully good weather!! Please see my BLOG above for the address to our BUDDY WALK page.
Love,
catherine

Peter - Carepage - August 11th, 2008

PETER IS 15 MONTHS OLD!!!

Peter visited Dr. McCaffery today for his 15 month check up. He flew through with flying colors. He measured in at 29.5" and one ounce short of 20lbs. I am so excited!! He has officially moved from below the 50th percentile to above the 50th percentile for boys with DS (in both categories). The rice cereal is paying off! He is still very evenly distributed. If he keeps his current growth schedule he will be around 5'6" to 5'7" or so.....and honestly taller than what I expected. All else went well, he got one shot and bounced right back per John.

I am going to keep this short as Peter is upstairs crawling around into EVERYTHING! I had someone make a comment at Church that Peter is constantly moving and how that keeps me busy during Mass. And I smiled - and for that moment in time I gave God a big thank you for Peter's health to be so active. I just love watching him take off down the hall to discover what the other kids have left in their wake. What was special about this weekend is that I found myself many times just staring at Peter - and really thanking God for Peter - not for his health, or his energy, or his smiles, or anything else....purely and simply for Peter!

He has enriched my life beyond words, and he's only 15 months....there is still so much to enjoy. And as I sat on the floor today trying to get Peter to play, but to have him turn and race down the hall towards the kids room, I felt the situation somewhat prophetic. I've subconciously counted on Peter to be our life long companion. But, as I watched him race down the hall to discover his next adventure I smiled....one day Peter will likely leave home - on his personal quest for his next adventure and where ever that will take him. It was bitter sweet because on one hand I wanted to hold on and never let go, and on the flip side I wanted to say "run, jump, laugh and discover - too many of us forget to do that!"

Good night! May God continue to bless us all, and may we be reminded to thank Him for all.

Love,catherine

Peter - Carepage - August 9th, 2008

DU SAYS: WE ROCK!!

Well, Peter had his study yesterday. The results I will get will be generic as they can't disclose exact scores, etc but I think Peter did great! We had to wake him up to get him ready and out the door to Denver. By the time we got there he was a bit tired. They took us back to a crowded room, had me put Peter down and literally 10 or so people just stared at him. Peter sat perfectly straight and looked at each person - examining their face and then smiling at them. He wasn't his normal vocal active self - it was as if he was trying to behave really well. But, he did relax and moved around, played with water, etc. Then they had us leave as they documented stuff. I was then invited back to meet with the panel and ask questions. The feedback was so positive - basically they said that Peter did great - was social, attentive, purpose driven and all around well developed. They were happy to see Tommy play with Peter, and observe that interaction. In a nutshell they said we are doing great, doing the right things, and to stay the course with our "healthy" approach to raising and challenging Peter. They commended us not being overly protective and encouraging Peter to explore and play, play, play. It was so great to have that re-assurance.

We had lunch off - so went across the road for lunch with our friend Pam Hernandez. Pam's husband Jacinto was the doctor I mentioned in my early carepages as really making sure Peter got the best care possible at TCH. Anyway, know how God just knows what you need? - well, I needed Pam. We had a nice lunch together catching up on families. Pam walked across the road to see the learning center - and thank goodness! Tommy was not allowed into Peter's afternoon session - so instead he played outside with Pam. He liked her so much he asked her if she was a grandma :-)...oh Tommy! Thank you Pam!!


Peter did PHENOMENAL in his afternoon session. They tested his cognitive skills and he pretty much did everything they asked of him. He was more his normal self - moving around, exploring and talking. The lady testing him was very pleased and often seemed surprised at how much Peter did. Looking for toys under towels, ringing bells, squeaking toys, knowing to look for things in cups, banging blocks together and so much more. And he seemed to have such a great time showing off his skills.

It did tucker him out though! He slept the whole way home and another hour or so after we got home. Tommy too was tuckered out. I had promised him a Starbucks drink on the way home. I didn't even spot the store - but Tommy did - yeah Tommy! So we got our drinks, got on the highway and he was out like a light. It was a nice drive home in the pouring rain. It gave me the time I needed to just relax, pray and contemplate....and really be thankful for the opportunity this experience gave me. It reassured me that God does take care of me - he gave me Pam when I needed her most! And, he gave me the therapists that boosted my confidence in how we are doing with Peter. I told them how I always worry that "I don't know what I don't know"...and afraid that down the road I will say "If only I had know xyz, Peter would be doing better". I don't want to limit his potential by my lack of knowledge. They smiled at me and reassured me, and really congratulated the whole family on our approach and successes. They commented on the love, support and good sound common sense. Yeah!!

Running to take Jack to a birthday party - but wanted to let you know that yesterday went really well.

Love to all
Catherine

Jack - The Little Quarterback #2

I had to share some photos of Jack at his football camp. This Saturday was the last session - and as predicted, Jack was quite disappointed. However, he still talks about what happened, how much fun he had and what life will be like as a Denver Bronco! We really do need to find him a Fall camp. Jack is now all excited for Kindergarten - and really hoping he will be in the class with the loft. Fingers crossed! We did go school supply shopping - fortunately my thrifty daughter Alexandra found many supplies around the house we can re-use....including Michael's old "Ninja Turtle" backpack. Did you know "Ninja Turtles" are back in?? Well, Jack is excited about his ultra cool back pack! I do have to chuckle because as a late teen I thought the Turtles were soooo cool! I even have pictures of John and I watching the Ninja Turtle show at Disney's MGM Studios in Florida as a young childless couple....hmmmm.....not sure how Jack would handle that on the cool factor scale!

Go Broncos!

catherine

Peter - Carepage - August 6th, 2008

Have you checked out the new carepages? Well, honestly not sure how I feel about the changes to the carepages. They look cool, but I feel like I've lost some tools I had before....maybe I'm getting too old to keep up with technology. I've been shopping around for cell phones and I can't understand all the lingo on the websites - I think I really am getting old, and my kids will realize I am not a "cool mom"....oh well!

Peter is doing well. We still have issues on and off with him puking for no apparent reason. Not as bad as before, but still, a bit concerning. He's in a good mood and just as loving as usual - so that always makes us feel great! John and I are trying to figure out how to move to the next level with foods....he's so sensitive we have to be careful - he'll force himself to puke if you put something he doesn't like in his mouth - like mashed potatoes! We are also going to try and get some flavorless thickners so that we can introduce apple juice or something other than milk. Poor kids has to be tired of yogurt, applesauce, green beans and sweet potatoes. Will keep you posted!

Exciting news is that Peter is going to participate in a study at University of Denver. The Fisher Learning Center is doing studies on children with special needs - and providing FREE assessments. Given the hell I have gone through over the last year and a half since I moved to a PPO plan - the idea of getting something that will not include an insurance claim is just wonderful. Peter and I are headed up on Friday. In the morning they will do a "play" evaluation, and then in the afternoon a formal study/evaluation. I just want to get a third party perspective on where we are and where we are headed with Peter. I don't want to look back and say "if only we had known...". While each child is different - I am excited to have some "experts" give us constructive feedback on what we can include in Peter's daily activities to allow him to reach his greatest potential. I'll keep you posted and let you know how it goes.

On the down side - Peter and I will no longer be going to Florida as hoped. The challenges of figuring out oxygen transport in a short period of time left us few options and lots of cost. So, we are hoping instead to go to Peru after Christmas and spend some time with my parents. I haven't seen my classmates from San Silvestre in 12 years - so really hoping to see my friends!!

Good night to all - as usual thank you for all your support.
Love, catherine