Monday, December 31, 2007

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

Tuesday, December 25, 2007

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…, 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 – 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).

Tuesday, December 11, 2007

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 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 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