(To those of you who read my carepage - much of this is similar to what I posted there except I can be more wordy here!)
This post is not specifically about Peter - but about an issue that has me very upset that I need to share. I know this is rhetorical but...after spending the last year or so reading about Peter - how many of you would say he was a mistake? something to be feared? something to be avoided? someone that by the sheer fact of having an extra chromosone lacks dignity? how many of you think Peter is disposable? a burden? something to be eliminated as there are no longer institutions to shove him in? If you have never before encountered a person with Down syndrome - I hope that through this blog you have been exposed to the beauty, wonder and challenge that Peter is - no different than any other child. But let's be honest - many of us didn't grow up with this exposure. We didn't really know what DS is and what it means to a family. Will the child be deformed? will they ever be able to self feed? will they walk? will they always sit in a corner grunting and slobbering? There is very little I could have told you about DS until we found out Peter had an extra chromosone - one little tiny difference in the structure of his body that makes him different. We read, we reached out to other families and we became advocates for our son before he entered this world. Why? Because we firmly believe in the dignity and value of every human life - EVERY HUMAN LIFE! And I am not here trying to debate abortion - but would be glad to if you wish to take that on - I am here to talk about an alarming statistic that speaks to a lack of education, understanding and support to prospective parents.
In the US today 85-95% of parents who receive a prenatal diagnosis of DS will abort the baby. In Europe the numbers are higher, and believed that in the UK it is almost 100%. As many of you parents out there know - the comprehensive screening for "birth defects" generally is given after a woman turns 35. However, the American College of Obstetrician and Gynecologists (ACOG) is pushing to have ALL pregnant women tested - and specifically tested for DS. It doesn't take a rocket scientist to read between the lines - the goal being to further reduce the live births of babies with DS. Dr. Brian Skotko (http://www.brianskotko.com/) wrote a letter to the medical journal that published this initiative requesting that if the testing was extended to all pregnant women - that the initiative include training and education of providers on how to deliver the message and provide accurate/updated medical information so that parents can make better informed decisions. His letter was never published....
This year a group of bi-partisan leaders proposed SB1810 - initiated by Senators Kennedy and Brownback. This SB was aimed at providing accurate and comprehensive information to parents who receive a diagnosis of a disability for their child prenatally or after birth. This was not intended to push the abortion issue one way or another - but strictly to provide information to parents so that informed decisions could be made and support services provided. The SB died this week.
From experience I know what it is like to be one of those parents - scared, confused and looking for someone in the medical community to put it all in perspective. My OB didn't know what to tell me after the amnio - her uncomfortableness was palatable - followed by a "what are you going to do?". The doctors at the hospital followed up with a "we can schedule your abortion today". Only my pediatrician - whom if not for me would not have known the diagnosis - talked to me about what it meant, the challenges and the potential. If this was my first pregnancy, had I been younger, less firm in my beliefs and just as scared I can guarantee you there would never have been a carepage (http://www.carepages.com/ page: PeterAlistairKrause) or blogspot to read about Peter. I would have followed the lead of people that lack in education on this subject and ended Peter's life.
I am begging you to take the time to just sit and think about what this means. Please think about what this means to other little Peter's yet to come into this world. And take action! Let's ensure doctors and parents get support - let's get rid of outdated information, let's get accurate information in the hands of these people. Let's ensure OB/GYN's are trained on how to deliver the message of of prenatal diagnosis. Whether you are pro-life or not, I am begging you to get involved and ensure that information is out there - that is all.
Stretch your imagination with me for a second - think of the challenges you might have encountered in your lives - illness, broken bones, allergies, asthma, etc? Now imagine your parent had been told during pregnancy "your child is a boy - he has a 3% chance at austism, a 80% chance of having allergies, a 70% chance of being diabetic and a 35% chance of having cancer in his life, he will have 8 broken bones and will never be smart enough to ace Algebra"....do you think you would be here today? And where do we go from here? look at the advances we have made in medicine in the last 100 years. The advances will be exponential from here forward. So look 100 years into the future - we could be foretelling an individual's health assessment before they were even born. What will we do with that information if we don't understand it?
All I am asking today is that we ensure that as medicine advances so does the understanding of what is being reported. That as we empower our doctors to deliver diagnosis, they also be able to support and inform patients. I expect that from my doctors now - why shouldn't we expect that?!
I thank you for taking the time to read through my random thoughts as I honestly try to put my emotions together on a subject that is near and dear to my heart. As I find out more ways to get involved in advancing education and support services I will let you know. And please, if you already have some of this information, please post it here as a comment so that we can spread the word.
Wednesday, July 30, 2008
Monday, July 28, 2008
For all the Peruvian's out there - Feliz 28! Today being Peru's Independence Day!!
Peter has been busy!! He is doing great - over his cold and his appetite is getting better. He has been drinking a lot and while still has some spit up seems to be holding things down better since Dr. McCaffery put him on antibiotics for the yuckies in his throat and tummy. I think we are in for a long haul of this happening on and off as he is putting a lot in his mouth lately.
Speaking of putting things in his mouth - I think Peter started seriously signing this last week! First - he seems to suck two fingers when he is thirsty. It has been quite hot lately but he did it on several occassions shortly before feeding time and in those instances drank as if we had not given him liquids in days. When we feed him and he starts getting a little picky - usually because he lost interest in solids - he tends to get real fussy. Well, we will stop and do the sign for "all done" and "more". The first sign involves bringing your hands together and then seperating them off to the sides in a flip sort of way. Well, Peter was not bringing his hands together but as I asked him if he wanted "more" or was "all done", he would hang his hands over the side of his high chair and flip his little hands. It is the coolest thing to watch!! I met a little girl with DS this weekend who signs over 350 words....wow.....so now John and I are totally on fire to learn more so that we can continue to teach Peter and enable his communication. We had one book I picked up while pregnant - but the signs they teach are different from what our therapists are using - so we need to pick a new book up. If anyone has suggestions please let us know!
Ever have one of those days that you know you should just crawl into bed and hope the next day is better? Well, last Wednesday was one of those for the Krause family. We headed off to John's softball game - and despite our luck - the team WHOOPED the other team - way to go guys!! But, first I was talking to my friend Mindy. Alexandra decided to jump into the conversation - literally - she ran along an ledge, took one wrong step and did a very uncomfortable fall to the ground and was sore for a few days. During the game, Tommy decided to take on the same little wall and fell face first and split open his lip - and bled all over my white shirt. I don't think I've worn white in years - and now I know why. Anyway...let me set the stage - summer night, slightly dusk, summer breeze....ok....strong wind that makes it hard to hear the person next to you. Well, I was sitting in the bleachers talking to my friends Anne and Mindy. Peter propped in my left arm as usual - obviously I need my right hand for all the expressions that match my story at the time. Then I feel a breath taking, shocking, piercing pain in my arm - and I close my eyes to gather my breath. I sort of hear voices around me - including Anne telling me to give her Peter. Peter??!! Oh my goodness - it hurts right were Peter sits in the crook of my arm. I open my eyes to figure out what is going on.....Peter is surprisingly in front of me instead of his normal sitting position and I just got nailed by a softball - in the wind having missed the call of the umpire. Mindy - in all her wisdom - pointed out Peter's Guardian Angel was watching out for him....and was she right! I swear that Angel gently moved Peter over in the nick of time because that ball missed Peter by an inch at the most. One more amazing miracle for Peter!! Of course, as soon as the game was over we headed home because I dare not go anywhere else....my Guardian Angel must have been on a Starbucks break!
Love to all!
Monday, July 21, 2008
To get this blog up and running I am going to post an update on each child over a short period of time. So we start with Jack.....as many have heard me say he is the one that can inspire me and give me gray hair all at the same time. He is a daredevil at heart, constantly speaks with his "outside voice", is passionate about EVERYTHING, and can speak a thousand words with his facial expressions. Jack knows no stranger and ignores a "no" or "not now" or "later please".....so the world turns on his timeframe and if he has something to share he will at that time. His left eyebrow is sandwiched between two scars - testaments to "never-slow-down" attitude. But, just to watch Jack run is one of the most inspiring moments - I LOVE to watch him run. I want to live life the way he runs - he puts 100% of himself into it - the big smile, the sparkle in the eyes, enjoying the wind in his hair as his shoulders and hips push his body forward at quite a speed...Joy is written all over him! It is as if at that moment in time his whole body is rejoicing life!!
running in a obstacle course during his birthday part (Apr 2008)
Jack's goal in life is to play for the Denver Broncos. He can see a Broncos bumper sticker a mile away and get excited as if it were the first ever spotted. Those of us in the car know it is a about the 1'986,348th one spotted - but that is ok - it is fun to hear the excitement. To help his dreams come true, John signed Jack up for a "Little Quarterback" football camp. It is just four Saturdays for a couple of hours each but Jack's anticipation had been mounting for months. A count down going until the first Saturday arrived - of course that followed a Friday night with no sleep because he was so excited. It was bigger than Christmas!! With his little yellow jersey on, Jack is on the field with the big boys....but he had the biggest smile. He's fumbled and tripped, but smiling the whole time. With each water break we get those "did you see me?" questions and a blow by blow just in case we didn't see everything to be admired. Despite being one of the younger kids out there - Jack is one of the fastest....that whole "never-slow-down" mode. When camp is over we start the count down till next Saturday! Two down, two to go.....he's going to be devastated when it is over. We will need to find more camps for him to do.
I have to share a tender Jack moment. Those who have spent time with him know he is full of love and has a huge heart! Yesterday Michael got in trouble at home and was quite upset at the consequence. After apologizing to Alexandra and Jack for his actions - Jack ran after him to try hugging him. Michael was grumpy to say the least and was avoiding Jack. I asked Michael to stop - which he did (wow!). Jack put his little arms around Michael's hips and hugged as tight as he could.....you could almost see him shaking he was hugging so tight. Then he said "When I love somebody so much and they are sad, I just want to hug them really tight! And I love you so much Michael"......Alexandra and I were in tears by the short but amazing moment between the two boys. Of course tears, more hugs and kisses passed and Jack took that moment and turned it around by simply sharing his love so openly.
Promise to try and get some good photos of Mr. Little Quarterback soon! And he is off to Kindergarten this fall - so no doubt many more memories to share. Until then - we hope that you too will be inspired to live life to the fullest and run (even if for a few feet!) rejoicing in that moment.
We love you Jack!!
"come on Tommy - if you catch them with your tongue we don't have to shovel them!"
Saturday, July 19, 2008
Peter is doing great! We still haven't had the weight check but honestly not expecting too much there. He continues to be a picky eater but loves his thickened milk. Any additional calories he is taking in he is definitely burning off with his constant moving around. Peter is in to everything!! He is showing signs of trying to figure out how to pull up on things. While we have a long way to go - at least we are headed in that direction. We hope too that his constant energy is indicative that his lungs are healing. I think Peter too must be the only kid in the world that enjoys his inhaler mask. Everytime he sees it coming he starts laughing and will talk or laugh while it is on - so hopefully getting the steroids into all the little spots that need them! Since becoming so mobile, he has decided he doesn't want to self feed. No worries - we are still glad he is eating orally! He used to enjoy hand over hand activities, but has decided he is too independent to want those. Even when you are holding him he will try to push your hands away - as if saying "I'm a big boy - let me do it!". We were excited when he gently scribbled a few orange crayon lines on the menu at the Italian restaurant this week....yeah Peter! The fleeting moment was over fast as he really doesn't enjoy hand activities. We expected fine motor skills to be Peter's challenging area - but with time and persistence there is nothing Peter can not do! Maybe he will be an artist one day!!Peter came down with that mid-summer cold this week - not surprising since Jack and Tommy got it first. He is snotty nosed, and having difficulty sleeping....which means very tired parents as we are taking turns rocking him until he finally hits deep sleep. Although he was feeling lousy today, he did enjoy a toe dip in the baby pool today. John was teaching golf, so the kids and I headed down to the pool. Jack and Tommy rule the baby pool, and Peter would have too if I had taken a swimmer for him. I didn't think about it but he was lunging himself towards the pool. The toe dip rapidly became a dip up to the knees and kicking feet which was great. After a few dips Peter zonked out to make up for a lousy night last night....if only I could have laid in the sun and napped too! Fingers crossed he will kick this cold soon. Peter and I are trying to sure up plans to go to Florida in August. My parents will be there for a month, so we are trying to get Peter there for a visit and see how he responds at sea level. The thought of traveling cross-country with Peter and all the O2 tanks is daunting - but I am hoping a few rays of sun, sand between my toes and the relaxing sound of the crashing waves will be what the doctor ordered. Look forward to your feedback on the blog. Promise to try and get new pictures posted this weekend. Love to all - catherine
Wednesday, July 2, 2008
July 2nd - today celebrates a year since Peter had his open heart surgery. It has been a whole year…and I reflect on where we are today and where we were then, and all the traveled miles in between. First of course I thank God for the incredible blessing of Peter and his health. July 2nd, 2007 - Little scrawny green-haired mohawk Peter Bear. Prepping Peter for surgery. Smiling at him as he stared into my eyes reassuring me all would be ok. The smallest robe they had being way too big for him. He had yet to celebrate his second month. John and I doing all we could to be brave, and believing that this surgery would make everything better. The gut wrenching army of butterflies in my stomach as the time finally came when we had to hand Peter over and watch them walk through the doors and down a hall. Sitting in the waiting room wondering what the other families waiting were there for – what were they hoping for this day? We learned the power of friendship and the comfort that a long hug can give us – I am still so thankful to April, Chris, Tita and Ben for coming to be with us on that day. To share insight, humor, stories and laughter…but ultimately they shared something that I can’t describe – a reassurance and comfort that only friends can give you in a large sterile environment. All the people in the hospital, their stories, their fears and their hopes…all of us feel lonely in that moment but for the comforting presence of family and friends. And of course we come back to Peter, out of surgery like a trooper and on the road to recovery. And here we are today. July 2nd 2008. Peter is more than double in size. Still on oxygen and the challenges of pulmonary hypertenstion. He is sitting, crawling and really great at hugs. He loves his siblings and you can see the anticipation of fun when they walk into the room. He is a master snuggler who makes bad days beautiful, and can light up a room with a smile. He is eating without the need for tubes. He works on exercises and is very curious. He likes to screech and sing songs. His appetite improves if you sing “Ba Ba Black Sheep”. When I landed in Phoenix today it was such a familiar setting. For so many years with PacifiCare my travels brought me to or through Phoenix. I know where every Starbucks is! I looked around and realized that while familiar it was also different. The America West planes replaced with US Airways…Pizza Hut and Cinnabon in the same places, but some gift stores changed…magazine racks in the same place, but the faces smiling off the covers have changed. And then I realized that despite how I felt for the last year – the world kept on turning, and changing. That while I wasn’t looking because I was so focused on what was going on within the four walls of my home, the four walls of doctor’s offices and the four walls of hospitals – the world kept going on outside. Each place a mix of familiar and new…like a favorite book with a new chapter. Then I realized it mirrors our family. In some ways we are that familiar old book – well read and worn around the edge that naturally opens to the faded pages of our favorite memories shared over and over again. But we too have changed. We are all a year older, hopefully a bit wiser and definitely a bit softer around the edges. We know the fear of loosing a child, and the relief of having him in our arms. He still has the baby smell of a year ago, yet bigger and heavier in our arms. The picture on the cover of our family book has changed over the years as we’ve added the blessing of a child to our growing family, the book gets thicker as memories get added to the pages, yet we know there still is so much to come! So like the airport that is familiar but different, growing, changing, moving – filled with so many faces and so many stories, we hope too that our book of life will grow and be filled with warm memories, lots of laugher, full of love and a few more miracles of of good health. God bless you! ck