Peter - Carepage - December 31st, 2007

Just a quick note to share some great news! Peter went in for a weight check today and gained 3 ounces since Wednesday! YEAH!!!!!!!! Could not end 2007 on a better note!! We are hoping he contines to improve and gain weight so that we never have to use the feeding tube again. The news was too good to not share. May 2008 bring Peter even better health... Wishing you and your loved ones a healthy and happy 2008!! The Krauses

Peter - Carepage - December 25th, 2007 (Family Christmas Letter)

MERRY CHRISTMAS!! Earth to Krause Family!....Krause Family here!!

As we look back on the last year we have so many joys and a few regrets. So I am getting the biggest regret out of the way – we have done a lousy job keeping in touch! Despite writing a letter last Christmas, many of you never got it. Some of you may have via e-mail. Many of you have offered us support during this year and we have failed in getting out our THANK YOU’s…..so, please accept this sincere apology and gratitude for all you – our family and friends – who have been in our hearts, our thoughts, and our prayers of thanksgiving. And yes, we realize that Christmas day was upon us faster than we could say “Merry” – so we are thankful we have the 12 days of Christmas to still wish you a Merry Christmas – and of course a wonderful 2008 full of good health, love, laughter, family and faith!! Now, on to the updates! A year ago John had his dream job at The International – a golf tournament he was passionate about since inception while he was in high school. We were all devastated when it closed down in February leaving John without his dream. After much consideration, we decided to have John stay home again – for a little bit at least. This allowed John to work with his parents as they gutted and re-finished our basement. This project gave us a guest bedroom which was inaugurated by our parents and subsequently many house guests – whom we love having! It also gave us an office space which I (Catherine ) have been able to use as I continue to telecommute for UnitedHealth. What a blessing to be so close to home after commuting to Denver for 8 years in rain, snow and sun! Alexandra – she’s a teenager!! Can you believe it??! Neither of us feels quite old enough to have a teenager yet. At 13 she is tall, beautiful, smart, funny, faithful, curious and all around pretty amazing young lady. At 5 ft 6.1/4” she will no doubt be towering over her mother in no time at all. Alexandra is in 7th grade and still doing quite well academically - school is getting tougher though. She has developed a strong group of friends in and out of school. We are grateful for that as for many years it brought Alexandra heart ache and tears. Her circle of friends are all a wonderful group of girls from home schooling families, other schools in town and even a buddy up in Castle Rock whom she writes to on a regular basis. Alexandra played Volleyball again this year and has come such a long way from 5th grade – the best part was watching her just have fun. She opted out of some of the other sports activities as she felt they would detract from her academics. Alexandra dreams of growing up and being a family doctor and actress – don’t we all remember those days? She wants a house in the country, a wonderful husband and lots of children – biological and adopted. I look forward to meeting the lucky man that will marry Alexandra one day and together have their dreams come true as they make their mark in this world and leave it a better place than they found it.
Michael is on the verge of becoming a double digit young man as he turns 10 in January. Still handsome as ever, Michael is now in 4th grade. School has had its ups and downs this year – but Michael continues to be a walking book of general knowledge. His fascination with facts has not subsided. He still dreams of growing up to be a Marine Biologist and study sharks….a passion he is sharing with his younger brothers as he shares facts, pictures and interesting shark stories with them. Michael played basketball again this year – and WOW – what a leap! Last year Michael hovered around the activity waiting for the right time to get into the action. This year Michael was the action. As his coach said (in a complimentary way) he is “scrappy”. He just has a way of getting in there. And while he is not the “runner” on the team he is great at rebounds, stealing the ball and getting basket after basket after basket. He really was the top scorer by far! The highlight being when he scored the last basket as the buzzer rung at the last game! Michael is now preparing to head down to Peru as Alexandra did in 4th grade – and we are so thankful that my parents are still there to give him the opportunity to experience a world so different from Colorado Springs. Jack the man! Phew….Jack started pre-k this year and has yet to slow down. I know I’ve shared in the past how passionate Jack is about everything – his intensity level is off the scale – as his energy, his laughter, yes – his voice, but also his compassion, his love, affection, and joy for life. Nothing is mediocre with Jack. You can see it in the sparkle in his eyes, the excitement with which he tells a story, and the way a smile spreads across his face when he runs…or when he tells you he is “sad” about something. Jack will no doubt live life to the fullest! Despite being one of the youngest in his pre-k class he has a lot of friends, is doing great academically, and is in a committed relationship with a beautiful young girl named Elizabeth. She has stolen his heart as he blushes when he talks about her, prays for her every night and plans all the wonderful gifts he wants to bestow on her. His feelings are reciprocated as they have discussed their life together – but have not yet agreed on whether they will have 7 or 8 kids. Should be fun to see how this develops over their school years together! Tommy…Tommy-Tommy-Tom-Tom! He’s two!! Where does the time go? It seems like yesterday that I was all stressed out with his feeding issue that now seem so insignificant. He is the size of a little Viking – so all that worrying for nothing. Tommy began to stay home with John this fall and has been much healthier since leaving daycare. He is a mysterious little boy who can leave you pondering life. I jokingly say he has a streak of obsessive compulsive disorder – to which my pediatrician (after almost laughing himself of the chair) said “where do you think he gets that from Catherine?!”….yeah – I get the point! But, I think Tommy is a budding genius. He is curious but very analytical. He is very repetitive in his learning until he masters the skill. He can be very quiet one minute and in a fit of laughter the next. He can look at you with a serious look one minute, and wrap his arms around your neck the next as he gives you kisses and says “Me love you soooo much!” His verbal skills took off right after he turned two – and now can be very chatty…about the same thing – over and over again! I so enjoy when he keeps me company in the morning to drop the kids off at school….quiet while the others are rambunctious, he will then talk my ear off the whole way home!
Last but not least at all is Peter - Mr Peter Bear…..and where to start? Well, rather than give you a blow by blow on all little Peter has gone through - we invite you all to join our blog if you haven’t already. Simply go to www.carepages.com – you will need to register your name and e-mail address (take about a minute) and then access our page called PeterAlistairKrause (you need to type it in exactly that way). We have lots of pictures and updates there which we hope you will enjoy. Peter had a pre-natal diagnosis of Down Syndrome and a heart condition. As a family we prepared for Peter’s arrival by praying, reading, researching, signing up with agencies and meeting other children with Downs. Peter rushed into the world 10 days early on May 9th. He developed Pulmonary Hypertension which required he be in the NICU. After a week he exhausted his options in Colorado Springs and gave us quite a fright. He was transported by the Flight-for-Life ground team up to Children’s Hospital in Denver where he spent 5 weeks – between kidney failure, breathing issues, feeding issues and too many scares as his oxygen levels dropped dramatically – he came home for a few weeks in July. We enjoyed time at the pool together as a family before we had to head back up to Denver for Peter’s open heart surgery. He came out of the surgery like a champion and was home in 8 days. Peter has not slowed down since then as he continues to amaze us with his gentle nature, his wonderful disposition, his patience and his persistence. We have learned that so many things we take for granted really can be hard to learn – holding your head straight, getting neck control, rolling over or even breathing and eating. But Peter inspires us all to be little fighters as he keeps trying and trying and trying until he succeeds - then he moves onto the next challenge. It would take a book to share all we have experienced over the last 7 months with Peter – so I’ll try my best to summarize it. We have learned life is short but precious; we have learned that sometimes no matter how hard you try you can’t make things better – but you should never stop trying; we have learned to accept our inabilities and fill in those gaps with love and faith; we have learned that different really means VERY SPECIAL, and that when you think you aren’t capable of loving any more than you already do – along comes the next day and you are surprised to find your heart just got bigger. We’ve also learned that sometimes you just don’t know the right words to say to someone going through something you can’t even imagine – but that a smile, a hug or a simple “I’ve been thinking of you” can go a long way. We have learned that we truly are the luckiest and most blessed family – and for that we are thankful. So here we are, at the end of another year. We are tired – actually EXHAUSTED to be honest – we dream of simpler days and more sleep….but when push comes to shove – there is only one thing we would want to change. We wish we had the power of healing so that Peter could eat properly and have his Pulmonary Hypertension healed. But, until then we will keep praying for healing and hope that one day we can look back and say it wasn’t such a big deal. For now we will still have a bit of fear and a lot of love in our hearts as we watch all of our kids – beautiful and special in their own way – play together, grow together and love together. We wish you all a very Merry Christmas and a blessed 2008!! Love, John, Catherine, Alexandra, Michael, Jack, Tommy & Peter (and a big WOOF WOOF from Angel).

Peter - Carepage - December 11th, 2007

The last six weeks have been full of joy and turmoil. Peter decided from one day to the next to stop eating. Words can not capture the stress and emotions of struggling feed after feed while trying to balance work, a new job, kids activities and everything else it takes to keep the family moving forward. John and I are just so exhausted! For 4 straight weeks we struggled, hoping that somehow he was still gaining weight and being disappointed with each weight check. Peter continued to hover a little under 15lbs but fortunately did not loose weight. We started fortifying the breast milk again and introduced solids - but the challenge continued as he refused to latch on to anything. Friday he suddenly decided to start drinking again, and we are hoping is on an upwards trend. At today's visit he gained weight and is now 15lb 3.5oz - yeah Peter! The question now is whether we need to move forward with surgery to insert a G-tube straight into his tummy to assist with feeding. Dr. McCaffery is going to check with our cardiologist Dr. Duster and we should know more later this week. Since Peter has pulmonary hypertension there is significant risk with anesthesia. Please pray for the continued wisdom of these doctors as they consider the best course of treatment for Peter. I am trying to keep this to one page - so here are the highlights on Peter: * Halloween - he wore the same pumpkin outfit Alexandra wore as a baby but it was too cold to go out - so he helped hand out candy instead! * Before turning 6 months Peter was rolling back to tummy, and tummy to back - several months ahead of average for kids with Downs! At times he keeps on rolling until he is complete wound up in his O2 tube!! * Working on sitting with the help of a Bumbo chair - which has really helped with head control too! * Continuing to make choices during music therapy with Cathy - this really is Peter's favorite therapy. * Going from bearing no weight on his legs to figuring out how to push into the standing position while you hold his hands....now this is his favorite position and is guaranteed to bring smiles! * Hitting or surpassing all but one goal for 6 months in PT/OT sessions! * Saying a sad goodbye to nurse Felicity and physical therapist Sarah....but a warm welcome to physical therapist Kerry whom we LOVE!! She is doing such a great job with Peter!! She is also Sarah's sister-in-law so we can stay up to date on Sarah's adventures in the Ukraine. * Thanksgiving and getting to meet Godparents Bob & Sharon, and cousin Kristen...so much to be thankful for! * Putting up the Christmas tree and realizing how much has happened in the twelve months since decorating the tree last year when saying "next year Baby Bear will be with us!" * Moving from the craddle to a big boy crib - and loving it!! Things always seem busy in the Krause house, but I cherish the times in the evening when I can just snuggle up with Peter. It gives me time to reflect and remind Peter that he still has so much to teach me! I think about how much I love each of my kids...and while I have always told them I love them all the same amount but in different ways - how deeply truthful that is with Peter. While I spend my time preparing Alexandra, Michael, Jack and Tommy for the world - I find myself preparing the world for Peter. And watch out world because here comes someone amazing!! I've also learned that sometimes it doesn't matter how hard we try, we just can't do things. I am thankful that at the times I've been humbled into accepting my inabilities, that I have had my faith to catch me. I am thankful that God picks me up, wipes me tears, brushes the dirt off me, kisses my scraped knee and sends me back out into the world to learn something else. I'm thankful for answered prayers - even if they aren't the way I want them answered. With much love! catherine

Peter - Carepage - October 30th, 2007

Sorry, sorry, sorry - I can't believe how much time has gone by since the last update. Every weekend I keep saying "I need to update the carepage" and then Monday would arrive and another crazy week managing schedules, work and the house! It is amazing how time flies!! I am going to start off with the not-good but not-bad news. Peter had his follow up echocardiogram yesterday. The purpose being solely to check his pulmonary hypertension. While the results are what I expected, I was still disappointed. Peter's pulmonary pressures continue to be elevated and worsen when he is off of oxygen. We would like his pressures to be in the 20's - with 30 being the upper end of OK. Based on his prior echo we know he's in the mid 30's on oxygen but off of oxygen his O2 saturation drops from around 96% to 89% and his pressures jump to 46 within an hour. This is significantly better than before surgery, but no better or worse than what they were 2 weeks after surgery. I keep praying for a miracle. As I mentioned in the past, the hypertension scares me more than anything else Peter has gone through. In the back of my mind knowing that any day could be the day it becomes "fixed" and fatal. I pray to God that Peter heal and one day this too will become a distant memory as his heart surgery already is to me! Dr. Duster acknowledges that the risk is there for it to become "fixed" but remains optimistic that Peter is going to recover....he's just taking the slow road. He continues to believe Peter will continue his current oxygen needs till he is 12 to 24 months, and after that hopefully move to oxygen just at night and eventually nothing. Only time will tell.... On to some other news - Peter is AMAZING!! I hear it already - "Tell me more!!". I am sure you all think I repeat myself till I am blue in the face, but the fact is every day I believe this more and more even though I think that is not possible. Peter truly is amazing! He is grace under fire. Peter has the most pleasant and loving disposition of any child I have met. When he smiles, I melt. And when he just stares at me, I want him to see the best me I could ever be...if I could become a saint I would do it for him! His affection, his tenderness and his innocent vulnerability make me want to hold him tight and never let go! But, if I don't let go he can't accomplish what his little determined self wants to accomplish. It is amazing to see him get stronger and stronger every day. To see him learn from his different therapies and apply himself to them. His persistence is paying off! It seems like just yesterday that I worried he'd never keep his head midline. Now he does that easily, he brings his hands together in what looks like a prayer of thanksgiving. He smiles, and coos, and laughs. He answers you in babbles when you talk to him. He has <....drumroll....> figured out how to roll over from his back to his tummy and almost back. He is working on his arm strength to push himself up. His favorite game is having you hold his hands so that he can tighten and curl his body up to get into the sitting position. His reward being to chew on your finger till it is bruised (thank God there are no teeth yet!). And when he is tired he will curl is body back up and keep his head perfectly as he leans back down into a laying postion. He could spend hours going up and down from the floor to the sitting position. He has just this last week started bearing more weight on his legs. Where before he needed to be leaning against your body to push up and down, now if you hold him under his arms he is starting to bear weight and enjoy it. He loves it if you "eskimo" kiss him or let him try to kiss you back. We are soooo thrilled with how he has progressed with his physical therapy and were really bummed to have his therapist Sarah move away. She's done such a great job with him!
So Peter takes after John with his love of music. Give him a 'maraca' and some good music and he is in heaven! His eyes light up like the midnight sky over new years and you can see his little mind racing. No doubt one day he will be working his charms on the dance floor! His great music therapist Cathy has done wonders with him and is working on choices and sign language. Peter will actually look at flash cards and choose which song he wants next - he will sometimes pick the card on the right and sometimes the card on the left - after some serious checking them out. He appears to be signing "mother"....and while it may just be a failed attempt to get his thumb in his mouth - I chose to believe that I was his first signed word!! :-) Another highlight this month is having my parents here to visit. My mother was able to come after my brother's wedding in Spain (all together - CONGRATS ROGER & MONTSE!!). She has helped juggling the family schedule, kids activities and keep us regular with laundry. She has driven kids here, there and everywhere and done so with a smile. My father was able to recently come up from Peru which in itself is an answer to many prayers. After a very long and difficult recovery from surgery earlier this year, he was given the clear to travel recently. He's taken over driving the kids to school in the morning and steps in on a moments notice to play a game, find a child missing in action or just hold Peter so that I can take a shower! I just wish they didn't have to go home soon!! So here we are, almost halloween and so many of Peter's challenges seem so far away. And while the hypertension is still scary, I think I have found a balance that keeps me going. While I enjoy every moment with Peter as if it where the last, we sometimes just sit together where we can dream of the future. I won't ignore the risks, but I refuse to have them take away my dreams. Without dreams of tomorrow I would be depriving Peter of hope. So, between sleepless nights, long days, challenges at work and piles of laundry - I still dream of taking him to the pool next summer, his first steps, watching him run after Jack and Tommy, watching him grow and reach so many firsts still to come. And even better than the first will be the seconds and the thirds that will follow as he persists in mastering what challenges are to come his way. And yes, one day I think my Peter will be an Olympian. My loving husband thinks I've lost my mind, but on my to-do list is researching the sports and the special Olympics so that Peter and I can start talking about what he wants to do. I remember watching a show about the Special Olympics on TV back in 1995 when Alexandra was Peter's age. I remember watching it and having a feeling deep down inside that one day I would be there like those parents on TV. Now I feel closer to that odd feeling so many years ago....so with that said, it is late (I am sure I am almost out of space) and it is time to go dream of the amazing future waiting for our family - each of our children in their uniqueness and wonderfulness with which God made them - each special, and loved and such a part of the blessed life I've been gifted. Good night everyone!! Love, catherine

Peter - Carepage - September 13th, 2007

Just a quick update on Mr. Peter Bear. On Sunday Peter turned 4 months - it's amazing!! He seems to be making such progress lately that it is so exciting to watch. He loves to sit on our laps and blows bubbles. Well, sometimes he just down right spits on you. But hey, when you're a baby that is cute. He smiles a ton and when he's really into it, he will lift his head towards you and say "gggghhh". Sarah, Peter's physical therapist, was thrilled to see what progress he has made as he seems to be picking up momentum. His head control has come such a long way, he keeps midline so easily, he brings his hands together and holds on to toys. His tracking is not perfect, but he is doing so well at it - he really took huge strides after we received the swing with the mobile. He loves watching the animals go around and talks to them! He reacts to sounds and will follow voices. He is so well tempered and has adjusted to being part of a loud family. And....drum roll.....the most exciting part of our update is that his feeding has improved!! Yeah Peter!! Oh my goodness are we grateful. It felt like we had hit a plateau there for a while. He was consistently in the 400ml's per day range and on a bad day dropping to the upper 300's. He is supposed to be at 720ml's per day. Well, we have consistently been in the 500's for about a week now - and one day even hit 610ml's. The light at the end of the tunnel is getting brighter. Now, teething appears to be cramping our style a bit, but Peter is still trying to work through it - pretty much taking all of his feedings during the day. Leaving just the 11pm and 3am as one's we struggle with. I am hoping we can talk to Dr. McCaffery about increasing how much we give him during the day so that it is ok if he takes less at night - thus still getting his caloric intake. If we could get rid of the tube it would be sooooo exciting!! What I have realized in my very, very, very weary state is that Peter is teaching me faith. He is teaching me in a very real way that we don't give up, we trust in what we can't see and that our prayers get answered - just not always in our time frame. But, when pure of heart like Peter, then we smile knowing that God is taking care of us. Doesn't it take babies to teach us how to really trust?....I think of how much they trust us - to feed them, change them, cuddle them, and catch them when they decide to fling themselves in whatever direction. They've never really met us before, they don't have a plan B just in case -- they love us and trust us unconditionally without proof that we are worthy of this. If only we could keep this faith as we grow and become weathered by things of this world. Anyway....I ramble yet again! I hope y'all are doing great and enjoying the last days of summer. Thank you for journeying with us. And just in case you missed my very long ramble last time - my update did go over two pages. So read the bottom one first. I know some of you wondered why I started in mid thought and ended oddly. Hopefully if you read the first page the second will make more sense. And if not, please forgive me, I can't think of the last time I got a good night rest. One day! HUGS!! catherine

Peter - Carepage - September 4th, 2008

I apologize for the delay in this update...I know I promised one for this time last week. In my good old sorority tradition I will do the pro-con-pro approach to updates. First - the Buddy Walk was GREAT! Thank you to all who supported us, and especially our friend Mindy who despite being quite pregnant not only walked the 5k, but helped round up the Krause Kids! The event was a success and we all had a great time. The day ended with Peter winning the contest for the youngest participant with DS at the walk - so that was great. Of course I'd be dishonest if I said that was all there was to it - but the minute I heard there was a contest I was determined to get Peter in. After stalking several of the organizers it was finally time for the contest (after the walk). Well, my back was sore from carrying Peter in a sling and the oxygen tank for the 5k. But, when the time came I scooped Peter out of John's arms and ran towards the stage. Nice organizers in yellow shirts on either side begging me to not run, to not drop the child - but the panic in their faces was not going to slow me down from getting Peter to his first competition. Once on stage I thought Peter a sure winner as no one else was in sight. Then, out of the left came a baby that looked smaller than Peter. You don't want to know what my competitive mind was thinking. But, when they introduced their little boy as 4 months old, Peter was declared the winner at just 3.1/2 months old! Yeah Peter!! He has broken the 12lb mark, and so was looking big and chunky. Suffice to say "Roots" had nothing on me as I lifted my child with pride, made him wave his little arms and I grinned from ear to ear. John still laughs at the thought of Peter and I strutting our stuff....well, ok....me strutting my stuff and Peter along for the ride. With all the smiles he gives us, I'd say he had fun! :-) Onto the con update...Peter had his echo last Monday. His pulmonary pressures - while drastically improved from pre-surgery - are still elevated indicating that he continues to have pulmonary hypertension. After John brought him home and gave me the news, I sat rocking Peter for two hours and cried and cried and cried. I was so convinced Peter was healed of it. So confident he would be coming off the oxygen. So sure that we were over the worse and headed for a long and healthy life together. My confidence was broken at that time, and the panic of losing my child rushed forth again. I questioned God and told Him it was not fair that a little one like Peter have such burdens. He answered me through Peter's nurse Felicity - she pointed out that Peter is not in pain, he is happy and showers us with smiles. Then I realized that Peter is the only member of our family that could go through so much and still be full of love, smiles and hope. The rest of us would be complaining and quite dramatic. Maybe because he is so innocent, determined and full of energy he is the right one to endure such challenge. But as a mother it is humbling and very hard to not be able to take this on for him, or kiss it away. I talked to the doctor on Thursday wanting to know the prognosis as the fear of watching Peter die a slow and painful death was more than I could handle. He however remains optimistic that while Peter continues to have reactive pulmonary hyper tension, that it will be controlled through oxygen and hopefully improve. While it may never go away, he said Peter will need to be on oxygen until he is 12 or 18 months. Then may need O2 at night after that...only time will tell. Peter is the worse case of hypertension he has ever seen in a new born, and therefore believes it will take Peter longer than 99% of his other patients to recover. After many tears and prayers full of anger, frustration, begging and acceptance I am once again optimistic that Peter will continue to get better. The more I pray for Peter and just be with him the more hope fills my soul! So, I ask that you please continue to pray for Peter and his health. He is making small steps in the right direction with his feeding and I am hopeful will continue to make strides in the right direction with his pulmonary hypertension. His next echo is on October 29th. I am so thankful we have a great cardiologist who really knows his patients, goes to bat for his patients - and let's be honest - takes phone calls from hysterical, controlling mothers who ask 1001 questions (yep - me!). So ending on a high note - and the legend for the new photos - Peter had his first toe dip in the pool yesterday. Being that the pool was closing for the season, we didn't want to miss the opportunity. As a family we headed down to the pool with a couple of the neighborhood kids. Peter and I sat on the edge of the baby pool as Jack played in the water and Tommy circled the pool. Yep, Tommy will spend hours in the tub, but has refused all summer to get in the pool. Sigh...there is always next year! Well, Peter and I were enjoying sitting there working on his head control when we decided to take the plunge. John ready to capture the moment on digital disk (just doesn't have the same ring as saying on film - does it??) Anyway...I ramble again. Peter had was too busy chewing at his fist to listen to me explain what was coming. As he dangled over the water all his physical therapy paid off....he showed how well he can curl up his body as he kept his knees pretty close to his tummy. When he finally unfolded and dipped his feet into the water, he felt something new and wild. His legs spread out faster than you can say "splash" and then he was back on my lap chewing at his fist. And...thanks to modern technology...we have record of the first split second pool dip. Can't wait till next year!! Love to all, catherine