The Krause bears... sharing life

We've moved!!!

2009-12-28T17:30:00.001-07:00

PLEASE CHECK OUT OUR FAMILY UPDATES, ALBUMS AND SOON TO BE VIDEOS ON OUR NEW WEBSITE......

http://web.me.com/catherinekrause/Krause_Bears/About_Us.html

Advent is here....

2009-11-29T22:01:00.000-07:00

Where did November go? It seems like just yesterday we were rushing into Halloween yet here we are with December knocking on the door. Today we welcomed in one of my favorite times of the year - Advent. Father Mark hit the nail on the head today when he talked about the state of our hearts and souls - are we really ready for Christ to come again? He talked about weariness of the heart and amongst the scenarios from the readings today was anxiousness about “stuff of the world”. Well - that is me! I have been so stressed and so anxious and always feeling for the one thing I got done there are twenty that did not! I have tried very hard to get things done ahead of this Advent season so that I can truly just enjoy, reflect and prepare - what a glorious time for Gretchen to arrive! I did pretty good today... a few borderline moments....but overall pretty good - hoping day 1 sets the tone!

As a family we prepared our house by setting out our nativity set - the same one we had out when I was just a child and my parents passed down the year Alexandra was born. One day it will be hers too! We decorated the tree and pulled out photos from last year to determine who was in line for placing the angel on the top of the tree and the lighting - this year it was Peter’s turn to attempt the angel placement (with a bit of help from John), and it was Tommy’s turn to do the official tree lighting. Once all was put up, lit and tied up the kids enjoyed a glass of egg nog with John (I’m not an egg nog person.... so I just had milk).

Just a short post to start the season! I have added pictures to our 2009 Family Album in our new website http://web.me.com/catherinekrause/Krause_Bears

love -

catherine

Thankful.....

2009-11-29T00:11:00.000-07:00

Here we are a few days after Thanksgiving. Alexandra is off at theatre practice for her upcoming high school production of Alice in Wonderland. Michael helped John bring in the boxes of Christmas decor ready to be pulled out. Jack and Tommy are wearing their matching cowboy boots (again!) and climbing all over the swing John set up in the front. Peter and I just got home from the grocery store and picked up (on sale - yeah!) our Christmas turkey to throw in the freezer for a few more weeks. And I reflect on the last week - the ups and downs, the joys and the stresses..... but here are the things I am thankful for with my family -

Peter.... I am thankful for the health he does have and the incredible amount of love and joy he brings to our family. I am thankful for the times he does eat properly and has good color. I am thankful that he is standing and taking a few steps. But, most of all I am thankful for his smiles and his hugs - and the way he so freely shares them with the rest of us.

Tommy.... I am thankful for his laughter and seemingly unending repetoir of silly jokes. I am thankful for his ability to adapt and flow with the needs of the family and his compassion towards Peter - when he can stand up and say “Peter isn’t different, he is just one of us” with conviction. But, I am most thankful that he is my child going through the “I want my mother” stage and will spend the time to quietly snuggle up when I need it most.

Jack....I am thankful for his spitfire attitude in life. I am thankful for his boundless energy and ability to keep up with everyone. I am thankful for his unparalleled ability to see the positive in life and his giving nature. When he rides the mechanical horse at the grocery store he always leaves a couple of pennies on the coin machine so that any child not as lucky as him will be able to use those pennies and have a fun ride too! Today he spent all morning making cut-outs of his hands so he could make coupon books for massages to give to relatives for Christmas... he has a special heart! But, most off all I am thankful for how he always remembers to give a compliment or pat someone on the back for a job well done. As I tell my kids “...people will forget the things you did and the words you said, but they will never forget how you made them feel”.... and with Jack I know he makes people feel special.

Michael.... I am thankful for his growing maturity and sense of responsibility. I am thankful for his inquisitive mind and natural curiosity about life. I am thankful for his ability to be the quiet strength when everyone else is way too loud. But, most of all I am thankful for the times he comes up and rubs my back because he just knows I need it, the little things he does to make things easier on me, and that of all my kids he enjoys spending time with me baking. We share a common love for brownies!

Alexandra.....I am thankful for the strong young woman she is growing into. I am thankful for her inner strength and her desire to do the right thing. I am thankful for when she prays for her friends, and when she talks to me about how to help others. I am thankful for her desire to make a difference in this world - and her concern for children with disabilities around the world. I am most thankful for her honesty and desire to include John and I in her life - the many times she shares what her concerns and joys are, what is going on at school, and her desires for her future.

John....well, what else can I say than he is the man that made the choice to spend the rest of his life with me - ups, downs, and everything in between - I think that makes me a very lucky woman.

This afternoon we started putting away our Thanksgiving and fall decor..... goodbye for another year to my pilgrim statuettes I love so much, and hello to our Christmas decor - the tree, the lights, the nativity and our advent candles. Hello to four weeks of soul setting much needed at this crazy time of the year.

We are thinking of moving our blog to an Apple/Mac based account and probably keep up the carepages. The link is a little lengthy therefore harder to spell out, but the ease of using our Mac technology to do updates may just out weigh the move off blogspot. Please check it out and let us know what you think!!

http://web.me.com/catherinekrause/Krause_Bears/About_Us.html

(along the top you will see the links to different "pages" - we have photo albums posted and hope to add video shortly)

Please let us know how you like this new site.... the name is a little long - but we hope you will save it in your favorites and visit us often!

love -

catherine

Getting Ready for Gretchen...and Peter's Steps!

2009-11-09T20:07:00.000-07:00

Well - under T-2 months until our little gal arrives! We continued to make huge progress in getting the nursery ready. After some disappointment I had to give up on my dream of a room with red barns, farm animals, and gingham fabrics. Instead we decided to work with the old bedding we had (I still need to pull out the sewing machine and repair a ripped sheet). We had painted the walls a pretty bright blue sky color. None the less I added some white clouds and yellow stars to match the Serendipity/Noah's Ark bedding. I have to say - I'm really happy with how it turned out! We still have a bit of work to do with the room - hopefully change out the old original 70's carpet (yucky!!), finish trim, put valance up and find a white dresser (please craigslist!!). However, I wanted to share how far we have come - so check out the photos!!

You'll also see how big Gretchen has got in my tummy..... can you imagine how big I will be by the time she comes along!! Now check out the picture below - does it not look like Peter is grooving in his update/new room? Little man is moving slowly towards independent walking but we are so thrilled with his progress. He's working on standing and getting his balance more often. His max was taking 8 tiny little steps - but we are generally around three to four little steps before coming down. However, he is getting further and further with walking if you hold just one hand (minimal assistance) and he is more willing to come up and have you hold his hand and take him for a little walk. He's also - by the true grace of God - got over the aversion to having stuff on his feet. If it is just socks he will still pull them off, but he let's us put Tommy's old shoes on his feet. Thank goodness!!

He has regained his picky eating ways - so we think that will be a challenge going for a while. He continues to work on signing though, and his favorite word is TRAIN - which often is vocalized a "tttt" sound. He literally could spend all day playing with the trains although that can at times mean disassembling the track and flinging it across the room..... oh goodness! I think we have assembled it a million times in the last couple of weeks.

Just wanted to share some pics. Hope all is well with y'all and that you are all staying healthy!

love,

catherine

Spooky Boo!

2009-11-03T21:46:00.000-07:00

Last week we had awful weather in the Colorado - icy roads, snow, wind, closed schools, nasty roads - just one of those weeks when you need to bunker down by the fireplace and forget the outside world for a few days. But, amazingly, despite what seemed to be a gnarly weather week, the seasons flipped completely and we had a balmy Halloween. Actually in our 13 years in Colorado I think this is the warmest Halloween I can remember having. There went my excuse for staying in doors - but none the less I retained my status as dinner cooker/candy hander outer. Disappointingly we had very few kids come by our house - we are two blocks away from the hopping spot in the neighborhood but I think all the dark houses on our block lead to us being missed. That and the news put the fear in everyone that they would get H1N1 if they went out trick-or-treating. So - you can do the basic math....not enough trick-or-treaters and my large family still knocking on doors. Not only did we have candy left over but they of course came back with a ton. As a result Gretchen is on a Tootsie Roll high right now! [For those of you reading this on the carepages please check out our blog for the pictures www.krausebears.blogspot.com]

Halloween started with pumpkin carving with Tio Greg and Tia Brenda. Their persistence paid off as they finally found the last pumpkins for sale in Colorado Springs. They came truly equipped to challenge the kids - and the kids loved it! Piled around the kitchen table there was carving, drawing, sticker pasting and the trips out back to spray paint the pumpkins. Jack and Tommy decorated while Alexandra and Michael carved away! Greg & Brenda got to enjoy some of John's traditional apple cider, and were challenged to a game of Yahtzee by the younger boys. Thank you Greg & Brenda!!

So what were the kids this year? well "green" in some cosmic sense of environmental again. My husband - with the big kid heart - reused his Darth Vadar outfit from last year. He wore it to the Fall Festival at school on Friday and was "taken on" by a miniature Luke Skywalker. Darth John's light saber failed and he gracefully bowed out of what could have been quite an event the school would not be excited about. He was ready for a challenge on Halloween night in the same great costume - but I think his challenge was getting all five kids where they needed to be.

Alexandra and Tommy paired up and pulled out old pumpkin costumes John and I wore to a party when we were first married. They were "big pumpkin" and "little pumpkin". Tommy was so darn cute because the costume ate him up. But he was so excited to get to do something special just with Alexandra. As a result here we are a few days later and she is now the object of all his prayers at the dinner table (I have been replaced!) and he still calls her "big pumpkin". Alexandra accented their costumes with some fake fall leaves - and was excited to have a shared costume with little man.

Michael decided to don a "death" costume my father had used a couple of years back. He glided through the Fall Festival in it - an image in black. But on Halloween night he added a nasty looking face mask I just don't remember how it landed in our house. None the less he was pretty excited. I however had to realize how much Michael had grown to be able to use this costume. Soon he will be taller than me too!

Jack loved his Ninja costume from last year so much that he wanted to use it again. So a little snugger on him he slipped back into it. However, he pulled out the belt that went with Michael's mini-Darth costume last year and put it on. So not only was he a Ninja - but he was a special forces Ninja that was fighting along big Darth (aka John). He is my eccentric little dude - and he made the costume all his by creating a whole long story behind his character. I love his imagination!!

Then we come to Peter who by no choice of his own re-cycled Winnie the Pooh one more time. Actually all the boys have used this costume starting with Michael way back in 1998. He gracefully put it on but was not too excited about it. But here is the exciting news - Peter has grown so much that the legs weren't long enough to qualify as capri's - they were closer to shorts!! It was so great to see how much he has grown despite being a peanut compared to the rest of my big kids. Peter's favorite part of Halloween?..... unplugging the fake pumpkin with a light in it. I swear if I had plugged that thing in at 3am Peter would have woken up, lunged out of the crib, climbed down the stairs and unplugged it. He has some 6th sense ..... which leads me to believe Christmas is going to be quite the challenge!! I told John we are going to have to set up and barricade the tree or get a little one that sits atop a high surface. I think tree, lights and ornaments are not safe this year....

Well....just wanted to get some pics posted. Only other news - last but most definitely not least - little man is taking a few steps here and a few steps there!! Maybe just maybe he'll be walking before Gretchen gets here!! He still prefers bear crawling as his primary method of mobility - but he has several times stood up - gained his balance - and taken up to 4 steps. At first they were the "how many steps can I take as I fall forward" type - but lately they are the more in control "I have my balance and know what I'm doing" type. I am so excited and so thankful and so in awe of the little miracle that he is..... I can tell he so desperately wants to run. He has a need for speed and I think once he can figure it out he will be a speed demon on two feet. The moments are sporadic so suffice to say no camera around - but hope to capture some pics of him doing it soon.

Off to bed I go. Hope y'all had a spooktacular Halloween!

catherine

Can I skip Halloween and jump to Thanksgiving?

2009-10-27T20:25:00.000-06:00

We had a busy yet incredibly productive weekend. A true team effort. The combination of getting stuff finally done around the house and an increase in chocolate intake has brought me back some sanity! Actually - I think it is getting to 30 weeks that has allowed me to step out of that hormonal homicidal stage and back to normal despite still being tired - a stage I am likely to stay in for quite a while. I am so looking forward to meeting little Gretchen Anne - but daunted by the idea of no sleep, midnight feedings and everything else that comes with a little one. Today John joined me for my OB appointment and we got a see our little gal in the ultra-sound. It was a good old fashion (ie. poor quality) ultra-sound so no great 3-D pics to share - but we got to see her. The hospital had requested that we do a "size" test at 30 weeks ....I am actually 29 weeks 6 days, and that is exactly what she measured in at. Doctor estimated that she is around 3.5lbs already. It was so exciting to see little parts of her emerge on the screen - an eye, a chubby little cheek and a nose. We saw her little lips moving in what appeared to be a sucking motion and I am certain she stuck her tongue out at us!

We are getting the house ready for her arrival. Michael moved into a room with Tommy and Jack. Not his first choice, but we are limited in options. Peter moved out and into Michael's old room. The room will be turning into the nursery Peter will share with Gretchen. So Saturday Peter and I did groceries and all our normal weekend errands. John - with intermittent help from the kids unloaded our normally too packed to be used garage. He sorted through stuff, re-packed and separated out things to get rid of....by the end of the day we can actually get the van back in the garage. Just in time as it snowed Saturday night and we were able to jump in a warm car and get to church on time. Celebration item #1!

Winter is coming - which to me means time to move around the family room furniture and getting the couch and love seat close to the fireplace, instead of the spread out against the walls that I like in the summer. In addition we are really trying to step up the therapy work Peter does. His toys often lost at the bottom of the tub that houses all toys. So now I had a double challenge - better set up for the toys and moving furniture around..... no new furniture as I just can't seem to find the bookcase I dream of on craigslist. So - now my project extended to the living room. Our house - built in the 70's - has built in book shelves in the living room. I put away the picture frames and nick-nacks we displayed on the shelves and converted it into our family library. Celebration item #2.

Once the books were moved out, Peter and I picked up a couple of baskets and Walmart, sorted through the toys and set up our old small book cases into what John describes as our "daycare corner". The toys are set up and now easy access for us and easy access for Peter and his therapists. A little too easy access as we are now picking up lego constantly as he can open the box and throw them. We also set the couch and love seat up close to the fireplace and the train table in the middle for all to enjoy. Peter could spend hours circling the table, pushing trains and disassembling the track. We also still have an open enough space for the kids to play the Wii on our old TV. I like the new layout and how we converted the family room into a functional playroom and cozy winter space. Celebration item #3.

John and the kids started to prep the nursery. We've got a way to go, but the walls are now painted! Our plan is to take the wall with the window and do a very basic mural - farm animals and red barns. I love red barns! There is something about red barns that inspire me - they remind me of simplicity - the life I dream of often. I hope that Peter and Gretchen will enjoy learning the names and sounds of the animals on the wall, and that one day red barns will warm their hearts as it warms me. So we have a bit to go - I am not going to include pictures as I want to wait until it is done .....but, finally taking steps to get it ready - Celebration item #4.

I've shared with you before that Peter has fought us like crazy to wear shoes. Well Celebration item #5 - we got Tommy's old baby shoes on his feet! Yay!! It has made it harder for him to practice taking steps - but a bit of a step back that will help us long term. Speaking of it, Peter has had great therapy sessions over the last couple of weeks. Just tonight as I was sitting here with John and Peter, Peter was trying to stand and take steps. He's not quite got his balance down as he wants to take off running - but this week we've seen him get on his feet and take three quick steps - yes, as he was falling forward, but none the less our persistence on getting him to walk assisted seems to be helping. I am so looking forward to him walking..... and hoping it is before I have to be carrying Gretchen around.

Now, Halloween is just a few days away. I have been meaning - since late September - to get out our fall decor and put some stuff up. Hmmm - didn't happen. So, as John reorganized the garage he pulled out my plastic tubs with fall stuff. The kids help me paste up some ghosts in the windows, a couple of halloween items for around the house and some pumpkins for the front steps. As I pulled the stuff out I found my favorite home decor - orange hanging style luminaries with an asian spin that we picked up for a couple of bucks at a garage sale around the corner, and the pilgrim couple I got on super sale at K-Mart after the holiday sale a few years ago. So - as I set them out in our dining room Sunday night - I found myself cooking up some comfort meatloaf and mashed potatoes, dimming the lights and lighting up the little tea light candles.... for that moment in time as I looked around at all the hard work everyone put into the house, reflected on my wonderful children and thought of our little one on the way I was reminded - I have much to be thankful for - and that is when I wished I could skip halloween and get straight to Thanksgiving.

Here is to finding the times to get things done, and times to slow down, dim the lights and celebrate our own little Thanksgiving for all the blessings we have any day of the year.

Hugs -

catherine

October - Down syndrome awareness month!!

2009-10-23T07:51:00.000-06:00

It seems every month there is a national awareness month - but actually every month there are many valuable causes hoping for greater awareness in their communities and around the country. Well, October is Down syndrome awareness month. I had originally intended this post to be family update and get more pictures posted - but I think I will do that later this weekend. Today I want to share with you our family experience with Down syndrome and some amazing links I hope you will check out.

This December will be three years since we got the call letting us know Peter had DS. But to understand the influence on our lives we much go back to the start. Growing up I culturally would hear the term "The children pay for the sins of the parents" - so you can imagine where my natural reaction to guilt comes from. I didn't know or see people with disabilities. When we travelled and I saw a disabled individual I was uncomfortable - the child in me wanted to look and understand, but the other grown up side would say "don't stare". At 16 I had graduated high school, and went off to a two year boarding school in the UK. As part of the program we were to enroll and support a community service program. One such program supported disabled and troubled youth in the community. Guess what - it didn't even make my consideration. I admired the folks involved in that program but "it wasn't for me". Jump to 1995..... young married couple. We have one beautiful and healthy child. We thought we were done - our world was going to revolve around her and only her. Sitting on the living room floor of our 2 bedroom apartment - John at work and Alexandra had just fallen asleep for a nap. The TV was on in the background and I was pulled in to something playing around the Special Olympics. I just watched. It made no sense - in my heart I felt something familiar, I watched the families cheering on as these awkward kids with big smiles ran around the track. I felt like it was me but it made no sense. I figured maybe one day Alexandra and I would volunteer.... that moment was written in my heart and at times it would pop back up and I would wonder what about that small period of time made such an impression.

Fast forward to December 2006. We knew the odds and were waiting for the results of the amnio. I had taken the day off work after a doctor appointment and decided to run over to the mall. I needed a distraction. That TV program on Special Olympics kept coming back up in my mind - was that truly my fate? Then I see two young adult boys with DS walking and laughing through Old Navy. With them two very attractive blonde teenage girls. Hmmmm.....what??!! My motherly instinct kicked in - surely these girls were talking advantage of these boys somehow - getting them to buy them stuff? That was not going to happen under my watch. So waddling behind at a distance I kept a close watch - let's face it, pregnant women don't exactly make the best candidates for undercover work. I listened - and then I realized these young girls were mentors. These boys were shopping for their families. And together the four of them were having fun and laughing. What a long way from the days I was that age and didn't know a face with DS from any other face of disability.

Then the call - yes, baby is another boy for the Krause family and he has Down syndrome. I told John as we stood in the kitchen. Trying to get our arms around the words and what this meant. We now knew for sure - short of some miracle our fate had been declared. This wasn't something that would change in a week, a month, a year or a few years down the road...... this was our for ever now. This would be a part of our family - change our family. John finally looked at me, eyes moist and said "I used to make fun of people like that when I was a kid - now that is going to be my kid that other people make fun of...." We just stood there. I tried to say all the right things about being in the US, the awareness, the support, etc....but really? Could I believe those words? Would people really understand and support?

The simple and honest answer is No. Reactions were all over the board - from very loving support, to the very often "I'm sorry - how sad", to complete avoidance, to "at least you know early and can have an abortion". Lucky for me the very first person I called was my amazing pediatrician. His reaction? "Alleluiah! Amen Catherine!! I have been praying for your family and this is just the best thing that could happen. It won't always be easy, but I am here and we will get through it together. Your family is truly blessed". WOW!! That was when my little cause of awareness started. I told John - we will set the tone for how the world reacts to Peter - yes, Peter, our son conceived in love. If we loved him, others would learn to love him. If we smile, others will learn to smile. If we encourage and give him opportunities, others will too. We as individuals set the tone for how others will respect (or not) our loved ones every day - but that tone we set is heightened when your child has disabilities - because often we don't know what to say or how to react - and we look to the folks around us to set that tone. That night I wondered - will his heart be healthy enough for him to be an awkward kid with a big smile running around the track as we cheer on? Will we be one of those families, or will I truly just be a volunteer one day. Time will tell.

So I can throw the facts at you on DS - most common chromosome abnormality, happens in 1 of every 800 births, older women are at a higher chance but the average age of a new mom with a baby with DS is in her late 20's, there is a push to screen all babies pre-natally for DS, when there is a pre-natal diagnosis 9 out of 10 pregnancies are "terminated". Children with DS have a much higher chance of leukemia and other medical challenges, 6 out of 10 will have cardiac issues, some will talk - some won't...... but really - how much of that changes the way you look at an individual with DS? These facts give us intellectual awareness. I want us all to also have a "heart awareness". These individuals are as unique as you and I - they have their own interests and desires, they have their own strengths and weaknesses. They laugh and love more than you and I - but they also can feel sad, mad or down right stubborn. The color of their skin, eyes and hair will be like there families - it isn't determined by DS. Their shorter stature, lower muscle tone and almond shaped eyes unites them together. Why? I think it is God's way of showing us who they are so that we can learn and appreciate.

I know I have many, many, many more years ahead of me - and in those years additional challenges and frustrations will come up - as well as opportunities to rejoice and celebrate. Peter has blessed our family for almost three years now with the knowledge of his specialness and I don't pretend to have the knowledge and experiences that come to those with older children or adults. There is much more for us to learn and experience. So here (after a lot of babbling) is what I want to share with you for heart awareness of Down syndrome - this is what I have learned from my little boy and how he has changed our family..... Life isn't fair, but I still need to appreciate what I have...this one is hard!! Life can be hard and painful, but I shouldn't give up.... only imagine recovery from open heart surgery. Things can be hard to learn, but it is ok to ask for help...... we can all reach up our hand and ask for someone to hold it as we learn to walk our journey. When we feel down and want a hug, all we really need to do is open our arms and someone will fill the space.... and going along with that - short of saving a life - nothing is more important than to fill that space when someone is opening themselves up for a hug. When in doubt smile.... isn't it better to have someone smile back than frown back at you? If you try something you may fail, and fail, and fail again..... but true failure comes from never trying. There is no such thing as perfect - only perfectly you. If you truly want to make the world a better place - simplify your life - if we focus on loving, serving and embracing those around us how can we not make it better? Simply put - the world is our mirror - what we see is what we are...... Peter reminds us every day how special it feels to get a smile and a hug. He has taught us that things don't come easy - but we need to keep trying. We have learned that we are all imperfect - some on the outside, some on the inside - but we must continue to strive to be the best we can be.

Here is how our children have been changed - Alexandra wants to pursue physical therapy and work with children with special needs. She wants to marry a special man who will support her in adopting a child (or more) with DS from other countries and give them love and opportunity. Michael understands different and is proud of it. He takes pride in taking Peter out and introducing him to the world - and loves Peter the most because he knows Peter loves him just the way he is.... he too hopes to one day have a child with DS. Jack has learned that being the big brother means helping and encouraging - he has learned that a big smile, a huge hug and a lot of excitement can encourage people to do what they didn't think was possible - he is crazy loud, but full of love. His teacher just told us yesterday how during class sessions with the counselor Jack was the only child that could read people's emotions and needs by looking at their body language - and he responds with compassion. Tommy knows no world without Peter, and therefore sees Peter as anyone else in the family. It is with those eyes that he sees the world - just as the world if full of differently abled people, so is our family - so that is typical. Gretchen Anne will also not know a world without Peter - and I believe she will be blessed with a best friend who will love and encourage her as much as she will him.

I hope you will take the time to check out some of these other links. The first is a song I found by accident that I found truly wonderful. This is a youtube video/song called "God doesn't make mistakes"

http://www.youtube.com/watch?v=NfuaNhXI1Ao&NR=1

For those of you football fans out there - you likely remember coach Stallings - mostly from his amazing success as a college coach. His only son (Johnny) had DS. He passed away not long ago. Coach Stallings wrote a book about the fears, challenges and eventual joy that came from his son. The link below is an interview he gave on his son Johnny and the impact on his coaching.

http://www.youtube.com/watch?v=9uUVez3kNcI

For those of you that are considering expanding your family I want to throw out a non-traditional thought. There are many children around the world with DS that are not as blessed as our Peter. They are left in orphanages and around age four are often moved to institutions where there life is significantly shortened by lack of care. One woman named Andrea has made it her mission to help these children find families. Single handedly she has helped hundreds of children find families to love and care for them. She is truly changing the world one child at a time. Below is a video she put together about her mission. Even if you aren't considering another child in your future, I hope you would consider a Christmas time donation to this organization that financially makes it possible for families to adopt a child with DS.

http://www.onetruemedia.com/otm_site/view_shared?p=9b08ab7214bb71b4b33e33&skin_id=1602&utm_source=otm&utm_medium=text_url

I do want to thank you - all of you - who continue to come and read our blog for your support and love and compassion. We are proud of all of our kids - and we obviously are very proud of Peter. I really do hope that traveling this road with us now has also brought you awareness on DS and the blessings we can obtain in life by embracing those that may seem most different from us.

Love,
catherine

Peter doing art on his new easel (thank you craigslist!)

Peter helping assemble the new train set - yes it is for therapy - keeps him on his feet, moving and stretching and coordinating fine motor for train movement. (thank you sale at Toys R Us)

Standing, stretching and putting dice in a cup....Disney Yatzee (thank you Tommy's friend for a fun birthday present)

Therapy on a tablet learning to draw lines (thank you Ms. Katie and fun games put together by the Air Force Academy to help special kids).

Thank you for Peter for sharing the joy you find in your efforts and accomplishments - we all celebrate those with you!

Dreams and Fears

2009-10-10T04:02:00.000-06:00

I don't think I ever sat down and shared the dream I had a couple of months back - and if I did, you get it twice! It warms my heart when I think of it. In my dream I was standing outside of church - looking at the grassy area that separates the church from the office. There was Gretchen (our daughter on her way). I knew it was her, and her back was to me. She had blonde hair and wearing a dress. Then I see Peter walk up to her and say "I love you Gretchen". She reached out her arms and they hugged. I heard her say "I love you too Peter". Then she took a step back and put out her hand. She said "Come on Peter" - he took her hand and together they walked down the sidewalk away from me. When I woke felt so happy!! Truly in my heart it was a sign of things to come. That Peter will always remind her how loved she is.... he will teach her laughter, simplicity, joy and love. She will hold his hand and help him navigate the world, she will love him back and together they will learn. I felt like she was telling me she loves him as much as I do - and that he will be safe.

Despite the warmth that dream gave me, too many days I have not felt warm and fuzzy and safe. I have not felt like the happy mom-to-be basking in the miracle of life. Instead I have been moody, and tired and worn out. At times I have been down right homicidal - and God blessed people around me with survival. I have felt guilt for not singing to the baby, talking to her, playing Beethoven and all those other things "good" and "happy" moms do. I have been so stressed out, and then I stress about being stressed. I drink too much milk and not enough water - and wish I could sleep all day and night. Despite my best of intentions I'm not exercising and after miscalculating my weight gain realized it was 10 more pounds than I had convinced myself.

Throw in H1N1 and the fact that half of Colorado Springs seems to be sick - I feel pressure! To immunize or not??!! Do I take the risk with Peter, Gretchen and me and not immunize? What if we get sick? what if we don't? This vaccine went to market so fast - contradicting information on mercury. It was developed in 38 days.....really? I'm scared to get it - scared to find out a year or five or fifteen down the road that Gretchen was hurt by the vaccine. Will it save us? hurt us? or end up being nothing? At times the pressure in my chest as I think about it is so tight that I feel like I can't breathe! I had a doctor appointment this week and during the drive in the car I had an epiphany on my stress....

I thought back to my pregnancy with Tommy. I was stressed then and traveling like crazy. Then he was finally born. All was supposed to be ok. At three weeks we found he was lower than his birth weight. The world came tumbling down for me. I took four showers a day just so that I could cry. I wanted to hold him all day and reassure him we would be ok, but at the same time I felt like I couldn't care for him. Well intentioned support just tore at my confidence "You're too stressed Catherine.....", "You just need to relax Catherine....", "You're not drinking enough....you're not resting enough.... you're not producing enough....you're not holding him right..... your not latching him on well enough....." AHHH! I just wanted the madness to stop. Then the "Just give it up" or "Obviously you can't do it this time.." or "I'm so sorry (you're failing)" or "breast IS best Catherine ". I seriously wanted to run away into the woods and never see the world again. I ended up breast feeding and formula feeding - we alternated feeds. He thrived, and I felt a bit better - as long as I didn't leave the house. I felt now stuck once again between opposing camps in the mother world. You know what I mean - we mom's like to take firm stands on what is best and God have mercy on anyone doing it differently. Instead of being stuck between the stay-at-homes that judge my working, and the working moms that judge the size of my family - I was now stuck between the breast feeding and not. UGH! Regardless I felt like such a failure that I figured everyone was judging me the same way..... all in my mind no doubt, but none the less not a happy feeling.

Just a few weeks before Tommy's birthday we found out we were pregnant again. Another bundle of joy! My first fear - would I be able to breast feed this baby or would I go through that all over again? My confidence was shaken and I hadn't quite got it back. A few weeks later the doctor at the hospital said "The baby isn't developing normal..." and a few weeks after that the phone call I took in the kitchen. John standing there as a female voice says to me "he has Down syndrome.....I'm sorry!".... followed once again about my "choices" to solve for the problem. Here I was - worried about weight gain, breast feeding and suddenly I'm hit by lightning - none of that matters - it came down to a matter of will he live or not? how bad is his heart? and what in the world can anyone do to save him? Then in those dark sleepless nights - the crazy thoughts we all get (don't tell me you don't!!) - the "what did I do for this to happen to him?" the childish thoughts of "God is punishing him for something I did - this is all my fault". Then during the day the grin and bear it as people avoid you, walk away or move to the other side of the room and hope you don't notice they exist. I got to the point that hearing "I am so sorry" and "How horrible" was more comforting than being alone. Tack on John lost his job, my dad got terribly sick and I couldn't be there, and I wasn't sure if I would have a job or not post merger. I honestly shut down and went into auto-function mode. Checking things off my to-do list became a drug - that sense of satisfaction that I was doing everything I could possibly do before he arrived so that he had the best odds possible. I researched conditions, asked questions, called hospitals around the country for second and third opinions on his heart, I stared at ultra-sound pictures, I interviewed doctors and had plan A through Z figured out. Surely I had done all I could and this would be ok..... well, for all of you who have followed this blog, you know what happened next - almost 8 weeks in the hospital, pulmonary hypertension, kidney failure, unexplained infections, bad blood counts, failure to thrive, feeding tubes, oxygen tubes, open heart surgery, therapy.....let's just say we were as best prepared as we could be, but you sure just can't plan for everything. The world caught up with me when Peter was 17 months and taken off of oxygen during the day. So three years and two months after I thought my world came tumbling down with Tommy not eating well, I finally felt like I could allow myself to break into a thousand pieces and just cry - cry for the stress, cry for the relief that finally some things were behind us, cry for the joy of having survived. Joy that despite it all Tommy still loved me regardless of the failure I felt, and that Peter could finally breathe on his own at least part of the day.

So..... I know that seems like a long way to get to my epiphany this week - but here you go.... I realized that with all we've gone through over the last four years I am having a hard time believing that all is ok with Gretchen. The stress I feel in my shoulders and back is from me constantly being in that bracing mode. Bracing myself for what I don't know.... that fear of what is around the next corner I can't see. That loss of confidence when Peter failed echos and that sense that we were being sucked back into the world of uncertainty. That need to just survive - and not feeling confident I can. Then in the darkness all those horrible little voices in my head....except I wish they would just stay at night..... but now they speak during the day too! UGH! I'm not the wife I thought I would be - happy, encouraging and support....nope, sometimes (often at times) I am the nag, the tears, the complainer. I'm not the mom I thought I would be..... I'm not at home, I don't school my kids - darn, I don't even color, finger paint or make the home made play dough! I don't do fun creative learning things (except we all pile into the kitchen to bake brownies and make ice cream when the good Lord knows if I don't get chocolate the world will end) ....I'm not the ever pulled together mom you see in the magazines with the capacity to be all things to all people and raise perfect kids. Now, to my little defense - I think my kids are great, I do get food on the table and clean clothes on their backs! None the less I dream of being so much more and I feel each day that passes is another day lost. I'm not the friend I thought I would be.... I get too tired to call, fail to invite people over, I forget birthdays and honestly I rarely go out. And yes, since I'm letting it all out...... sometimes I just want the world to go away so that for a day I can have silence!! And selfishly I wish the weight would melt away, my house would self clean, there was always a ton of money in the bank and I had an endless Starbucks gift card! I wish for time, wisdom and confidence to be the mother, daughter, wife and friend I want to be. And while we are at it - I wish for world peace and end to hunger and all the house projects to finally be done!! (All three feel like the same likelihood of being attained!).

So.... I promise I don't need to be committed.....this has been eating at me and on another sleepless night I knew I would feel better if I could just let it all out. As with all of us - I have good days and not so good. Days I feel like I can do it all - and days I feel I can't do a thing. Days I thank God for all the blessings, and other days I am so darn mad at Him that I don't feel like talking. I'm human - you're human - and sometimes I remind myself that even those picture perfect moms in magazines are just pictures and we all have our burdens and blessings. And as if to remind me of this - out of no where tonight an old set of keys I had was on my nightstand. Keys to the old PHS building in the Springs that closed some time ago (I bet I can still get in!). Attached was a keychain I thought was one with my name on it. I turned it over in expectation to see "Catherine" and instead what I saw was "God grant me the serenity to accept things I can not change, courage to change the things I can, and wisdom to know the difference". Yeah.....even when I doubt, He is there whether I choose to accept the grace or not. So here is to hoping for the wisdom I clearly am lacking at times as I try to change the world in all the wrong places - and wisdom to embrace and find the light in what appears the darkest corners. And since I am still on a roll - here is to going back to bed, actually falling asleep and quiet kids in the morning that won't wake me up!!

For those of you that read this far.....thank you for letting me feel like I can just let it all out in the middle of the night and that I'm not alone.
Love - catherine

Another Family Update

2009-10-03T23:33:00.000-06:00

Ok - so I am going to quit saying I have no excuse for not updating the blog - so here is what I consider my semi-valid excuse - I'm a pregnant mom with five kids at home and a full time job - I am tired, worn out, achy and although every night I tell myself I am going to update the blog - when push comes to shove by the time I am done tidying up, putting away dinner, making lunches, cleaning the kitchen, setting out breakfast, packing up school stuff, putting away laundry and setting out little boy clothes I'm wiped out and bed sounds better. And then I guilt the next day that when memory loss kicks in I'll wish I had this blog - about as close to a journal as I have right now ....but so far every night the desire to roll my aching body into bed has outweighed everything else. Pregnancy is wiping me out - clearly I'm not the spring chicken I was when I was carrying Alexandra 15 years ago!!! Speaking of pregnancies - all is going well, the echo's and blood tests we had done all came back very positive. I chose to not have the amnio - and optimistic that all is progressing well. We did get confirmation the baby is a girl - much to the excitement of John and the kids. He's had the name picked out for many years waiting to be used - so our little girl will be Gretchen Anne Krause.....eta January 7th 2010..... however I intend on willing her into the world on December 31st 2009 - no! not for the tax credit, but because I have a PPO plan and I don't want to have to meet my deductible all over again!! Here's that latest pic of Gretchen Anne.

Working our way up the kid list - Peter. Little man looks like a unicorn right now. We don't know what happened - but he snuck away from Grandma to fight the table and lost some how. All of a sudden we hear his "I'm really really really hurt cry" - I was fighting Alexandra's hair and a curling iron - and could hear Grandma comforting him. By the time I saved Alexandra and me from being burned, poor Peter had a bump literally the size of a golf ball in the middle of his forehead. I seriously don't know how he could of done it!! However, once dinner was served he was distracted and on to new things. Our picky eater who survives on little has found an appetite in the last week or two. He must be getting ready for a growth spurt because I have never seen him eat like he has recently. He can now down a whole toasted cheese sandwich which is amazing for him - and tonight ate about a bowl and a half of mac-n-cheese!! Still will only have yogurt for breakfast - but we are going through it a lot faster lately!! He's still not walking - hints at being interested and then goes right back to bear crawling. He has however picked up quite a few more signs lately - we suspect he's doing more than we realize. Still slow on the vocalizing - but has a few times made animal sounds when we talk about animals - and has made ba sounds when signing book. So I am stretching but we have "da" for dog, "ha" for hi, "taya" for tired, and now possible "ba" for book. I am still very optimistic that one day I will hear him whisper "I love you" in my ear as he gives me his already world famous bear hug!

Tommy and Jack - well - I have to lump the dynamic duo together. They really are best buds like buds should be! They have so much fun together...... Jack is loving 1st grade and is coming along with his reading. He is doing flag football this fall - and much to my embarrassment I have to admit he's the hyperactive unfocused but extremely excited little kid on the team. He doesn't lack for energy - but is clearly lacking in focus..... just need to keep working on it. Tommy is at Corpus Christi with Jack and now has his own little group of friends. Of course he claims Jack's friends as his own too - and loves to see his big brother at school with him. Tommy has amazed his teachers with how smart he is - he was recently tested for letter recognition. While the other kids recognized 5-6 letters in the alphabet - Tommy had well over 20 almost nailing the whole alphabet. He can tell us how to spell his name and is constantly pulling out letters that others' names start with. He fights wanting to write or color or draw - but I think is ready to start working on sounding out letters and early reading skills. Tom-Tom did turn 4 just a few days ago - and we have his party tomorrow. Here is the Jack-Tommy team during one of their many play sessions.

Michael switched schools - and while I was very hesitant I must admit I have never seen him happier. He was mad about the move until about first day of school - and has since embraced the new setting. He's very excited about what he's learning and the style of teaching. Amongst his subjects is Latin which he is picking up so fast. Of course he loves to bring his book to the dinner table and test our latin skills..... thank goodness for my background in Spanish or I think I would flunk out of Michael's grilling us!!

Alexandra just called me to check in..... she's headed over to a friend's house for a sleep over following her first Homecoming Dance in high school. She too is really enjoying school this year - her group of friends - and playing softball. She's really picked up the sport - and we enjoy watching her play when we can make it (not always easy with conflicting schedules). She did get asked by a boy to the dance - which made her feel special. He's new to the area - but she considers him a FRIEND. All my brainwashing techniques are paying off as she let John and I know that she is not ready to date - doesn't want to date - but hopes to have a group of friends girls and boys that she can hang with. She's definitely on her way there. Here is is getting her corsage...... she looked beautiful. She reported in to let me know she was exhausted, headed over to the sleepover and will tell me ALL about it tomorrow.

Anyway - I'm pooped. John is up in the mountains fishing this weekend - and after homecoming, a softball double header for Alexandra and having a birthday party to organize tomorrow, I think Gretchen and I need some rest.

Love to all -

catherine

Echo & Buddy Walk Updates.

2009-08-24T23:28:00.000-06:00

It is late, and I am tired.....so no long stories or pictures tonight. My back is sore from taking laundry up and down the stairs....with so many of us it is quite the daily project!! Anyway good news, and great news. Good news - Buddy Walk was this weekend. A huge THANK YOU to all of you who supported us - we really do appreciate each of you!! And of course huge appreciation for Adam, Mindy and little Thad who have joined us each year. First year Mindy was pregnant, last year Thad was a wee one, and this year he was a walker!! We were also joined by my parents - and I think for them it was awesome and overwhelming to see the sheer volume of people who come out to support DS awareness. The weather was perfect again - and we had a great time! Great news - Peter finally had his follow up echo today. Following two bad echos there was a lot of pressure on the one today. Sort of that crossroads for him medically. I didn't realize how stressed I was until I was on work calls ahead of his appointment and could barely talk because I so desperately wanted to cry. It was however as if Peter knew how it would go because he was full of smiles and laughter the whole ride down. The echo took about 3 times longer than normal, followed by and EKG and regular stats reporting. But, after the eternity of tests the outcome was positive. Peter's pulmonary pressures are once again normal. Not only that, but Dr. Duster said this was the best he has EVER seen or heard Peter. He felt very optimistic - so much so that he doesn't want to do a re-check for 9 to 12 months - and hope he won't see us over the winter if Peter gets sick. Not sure I'm ready to go that long with out Dr. Duster .... but we will try! Anyway - Alexandra was hogging the computer on homework, and I wanted to get the update out. Promise to post pictures soon - but I need to get to bed. Almost 21 weeks along now and Lord knows baby and I need a bit more sleep than we are getting. Love to all - thank you for all your prayers - God continues to give us miracles through Peter!! catherine

Peter's NICU Reunion for St. Francis (Colorado Springs)

2009-08-08T20:05:00.000-06:00

All of our boys have been born in Colorado Springs, and all of them at Penrose St. Francis - Community Hospital. Peter being no exception. He spent one week there at the NICU before getting transferred to The Children's Hospital in Denver. While we were at St. Francis many special folks took care of Peter! We always remember fondly staff and have so often thought of visiting and taking cookies - or going on Peter's birthday.... but good intentions never followed through on. Well, then the hospital closed and moved to a new facility in town - the St. Francis Medical Center with amazing views of the front range and Pikes Peak.

The NICU team through a NICU reunion today to celebrate the first year of the new facility being open. There were four people I was hoping to see there - Dr. Prado (Meg), Susan, Birdie and Helen. Dr. Prado had just moved to Colorado shortly before Peter's birth - moving here from Miami. We felt and instant connection with her - and appreciated the very personal care Peter got. Susan, Birdie and Helen were the chief nurses that ran the NICU and covered all the shifts. Each is different and special, but we felt that to them our child was Peter - not a baby with DS, not a cardiac case, not a very sick baby - but rather Peter that happened to be all these other things too. Anyway - they have been in our hearts since the one week they cared for Peter - and it was great to see them again today and have an opportunity to thank them for the care they gave him and us!!

We would remember them always, and recognize them in a crowd because of what they did for us. But, we knew also they have taken care of thousands of babies over the years. Yet, as we walked up to Dr. Prado and Susan with her, we said "Not sure if you remember us..." and before I could finish she said "How could we forget you Catherine!". She remembered Peter by name too - asked how he was doing - and they both smiled huge to see how far he has come from the one week in May of 2007. It warmed my heart to hear them talk of Peter - they even remembered that Dr. McCaffery was his pediatrician - and said how often they thought of us and hoped Peter was well. Sniff sniff.... it is those moments in life that mean so much!

Peter & Dr. Prado

Peter & Susan

Helen, me, Peter, and Birdie

Peter has his echo scheduled for this Monday - but we think we are going to have to reschedule. Jack got a cold earlier in the week and we have been praying for Peter to stay healthy. But today he woke up with a bit of a runny nose and tonight has been more snotty. I too am starting to feel the congestion - so think we will need to reschedule to when he is feeling better. My next ultra-sound is scheduled for the 26th - so will let you know how it goes and if they can confirm baby is a girl (or not).

Buddy Walk is in two weeks - hope you can join us!! My parents will be here - so we are incredibly excited to have them be there. And in true tradition the Youngers are joining with Thad..... he was still in Mindy's tummy the first time we walked! Now he'll be walking across the finish line on his own. We hoped Peter would too - but walking is something we are still working on. Peter took two steps completely on his own last night for the first time.... we have a way to go but it is great to see him try again.

Love to all -

catherine

Please support our Buddy Walk team - Go Team Peter Bear!!

2009-08-03T23:33:00.000-06:00

Dear Friends and Family,

On Saturday, August 22, we will be walking in the Colorado Springs Down Syndrome Assn (CSDSA) Buddy Walk to show our support for the more than 350,000 individuals with Down syndrome in the United States. I (Catherine) have signed up to be a team captain and want to do my part to make sure that each individual is given every opportunity to reach his or her full potential.

Every step our family takes, every dollar we raise, will help ensure that each individual with Down syndrome in the United States - like our Peter Bear - 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 Peter and people with Down syndrome in our community. For just $12 you can register to join our team - this includes breakfast, t-shirt, lunch, great activities and a walk! Kids under 12 register for $3 and get all the same great benefits! We greatly appreciate even the smallest of donations by those too far to walk with us. Being on the CSDSA Board I know what we do in our community, and how much more we can do!! We know times are tight and a donation can be tough - but we ask that you please join us for the walk regardless - walking with us is a priceless support for our family!!

Click on http://buddywalk.kintera.org/faf/r.asp?t=4&i=316900&u=316900-262860619&e=2589260244 to visit our family Buddy Walk page and join our team today! Go Team Peter Bear!! (if the link doesn't work - copy and paste into your web browser)

NOTE: If you will be registering more than one person and joining our team, please go to http://buddywalk.kintera.org/csdsa and click on "Register Here" and then "Register A Family". You will then be able to select my team and register your family.

Please share this information with your friends and family - the more support we can raise, the greater the opportunity for the future of our community and all individuals!

Come walk with us!
Many blessings -
The very proud Krause family!

Where did June go? and most of July?

2009-07-19T22:39:00.000-06:00

I know I sound like a broken record - but often I say - "I really should update CP and the blog tonight"... then tonight gets busy, late, tired, a work night, etc - and it slips off the "must do" list and onto the "wish I could" list. So admittedly while I am really tired and could go to bed I'm not. First, because I will be mad if I don't do this, and second because I have a pile of laundry on my bed waiting to get put away yet the laundry fairies have not yet showed up. Oh I could use some fairies around here to keep all clean, tidy and put away! But, alas until they move in I need to keep doing this :-) So.... since there is so much to share I need to do cliff notes version once again!!

Alexandra - school is over and summer ball began. Alexandra played softball for St. Mary's HS in prep for the fall. She really enjoyed it and made a few new friends going into a new school. She also took a HS prep class - which I question the usefulness of to be honest - but oh well, she is one step closer. Her schedule is set and she is itching to go shopping - this will be first time with no school uniform!!

Michael - also played ball! Baseball season followed Alexandra's. Michael had a good time, but is still certain he prefers basketball. He didn't have much luck his one painful attempt at pitcher, but did great up to bat and out in the field. He's not yet facing the new school in the fall..... i think hoping summer will last for ever! So far he has not dusted off his flippers for the pool (really not sure why) but has now got Jack into the mode of using snorkel type goggles to the pool.

Jack and Tommy - I lump them together because they are attached at the hip for all the ups and downs of summer days! Of course the matching cowboy boots are a must - but while Tommy will alternate into flip flops for the pool, or tennis shoes for playing, Jack insists on using his boots for everything. They are terribly worn out and can stink a room out. I am hoping fairies will show up in the middle of the night and take them to cowboy boot graveyard. Alas.... we still wait for fairies.

And Peter - well - there is so much to tell here! Good bad and everything in between. So let's start with the not so good and move on to better! The lowest low is Peter had his follow up echo and is still not "normal". His saturation rates were normal again - so that was good, but his pulmonary pressures while better were still elevated and out of the normal range. As luck would go there was another storm rolling into town while he was having his echo done, but two bad echos in a row didn't make the doctor comfortable writing it off as due to barometric pressures. August 10th Peter goes back for a third and final attempt. This time in the morning - hoping to avoid the chance of a storm. We hope he stays healthy between now and then for it! If it goes well, we are ok. If not then he will need to go into the hospital for a heart cath. The purpose being to get true pulmonary pressures within the heart as opposed to at skin level with the echo. It scares me to have him under sedation since we know mild sedation caused his oxygen saturation rates to drop drastically and he was not responding to increase in oxygen. Please please please - lots of prayer for Peter!! Also Peter is on another self induced diet.... hopefully just the heat - but he is not interested in eating again. Ugh!! Peter - come on little dude!! On the up side he continues to persist in his attempts to stand unassisted and walk - while admittedly bear crawling at 100 miles an hour proves to be more exciting for him! He is also starting to sign a bit more and took us completely by surprise when he looked out the car window on our trip to Montana and not only signed "cow" but also did "mmmmm" when I asked him what sound a cow makes. Totally awesome! While on our trip he took a dip in the big pool and found he liked it more than he thought he would - so that is exciting. And the up up for this week - he can now do the hand movements for his favorite song from beginning to end - The Itsy Bitsy Spider. Oh does he love that song! Replaced Ba ba black sheep as his favorite - and will cheer him up no matter what!!

Family news - first, we took our pilgrimage up to Montana. The trip rushed by and we didn't get to look up everyone we wanted, or do all we wanted - but thus are packed family trips. All in all we had a great time! John got in several rounds of golf which is always precious time for him. Alexandra made a few friends at the lake, took on a bit of rafting, got in a round of golf with John and a date night with him to the theater in Bigfork. Michael also got a round of golf in with John, ventured out in the lake on his own for a bit, but most enjoyed the family center with pool, shuffle board and a TV (let's face it - it was the TV!). Jack went on his first rafting trip which was exciting - it was Alexandra, Michael, Jack and myself - pretty mild rafting trip but he was excited we got up to class 2 rapids! Tom-Tom loved the time at the lake and playing in the pool. I think given a choice he would have spent the whole vacation in the water. Not sure Peter felt the same - but he did enjoy the pool time. He loved being at the parks and just crawling around - I think not being in the car was his favorite part!

Other family news - Peter is going to be a big brother! John and I have known for a while, but opted to not tell anyone until we could go through some of the initial screening. We know how stressful Peter's diagnosis was on us and the family, and we didn't want the uncertainty of this baby's health to put stress on our friends and family (YOU!). We are about 15 weeks along now and so far all is going well. We did the initial ultra-sound and blood test screening at the hospital and all came back very well - baby appears to be healthy and developing normally. These were the same tests that let us know Peter would have special needs. Baby seems to be following family tradition of being big as the hospital thinks I'm off by a week or so in my dates. Clearly they don't know how anal I am and that my dates are NEVER off when it comes to things ladies deal with monthly! Oh well. So baby ETA is first week of January - but likely to come a little sooner. And.... drum roll.... at first glance baby appears to be a girl!! John and the boys are dueling it out on baby names. The boys want "Annie" and John wants "Gretchen". So likely to be Anne Gretchen or Gretchen Anne. Watch it be a boy!! And, before you speedily reply to this post let me end with this. Yes, no, so far so good, looking healthy, yep we are serious, lots of prayers! That answers the a) are you serious? b) are you crazy? c) how are you feeling? d) really, how is the baby doing? e) ok... taking a breathe here.... are you really serious??!! and f) what do you need? ( hoping someone might be over the shock and asking that!). We really do ask that you keep us all in your prayers - but especially Peter and baby #6's health, and the grace and happiness we hope for all our kids.

And, I promise to do my best to update this sooner than 6 weeks! Hoping to get back to weekly or every other week. Peter is keeping John and I up tonight.... wants to party like its 1999..... so going to go relieve John and see if I can get some snuggle time in (well, after I do my laundry fairy duty!).

Love to all - catherine

Where did May go?

2009-06-02T21:59:00.000-06:00

I can't believe it is June.... seriously - where did May go? I am worn out, totally exhausted - not eating right, not drinking enough water and broke my exercise routine. I know where May is..... walking away and leaving me drained. What a month! So.... let me try and recap:

1 - John took an 5 night a week course for the whole month of April to become a CNA (certified nursing assistant). In May he took his state exam and passed - yeah John!! He has since been hired on by a local agency in the Springs and assigned to Peter. Because Peter's gaps continue to broaden between him and typical kids - the state will assign him a CNA to handle his care. Fortunately for us parents are able to do it - so we have the comfort of knowing John is still caring for Peter during the day and has the training to support him from a medical perspective based on Peter's needs.

2- Alexandra - this was a crazy busy month for my princess.... she was accepted to St. Mary's High School - a college prep in town earlier this year. She took some testing and actually was able to test up into higher level spanish and english classes. She also joined the school's softball team despite not having played before - training has started and actually as I type she is at her first game with John and Michael....8:45pm game is a little late for the little boys. This last week Alexandra graduated from Corpus Christi Catholic School - she graduated with high honors and we hear was in running for valedictorian but didn't get it. I think she is glad to be done with school. Friday she received her confirmation - another big milestone in her growing up! She continues to tower over me and gets more beautiful by the day. She is doing acting again this summer and really looking forward to it.

3- Michael - a bit of a quieter month for him thank goodness. He did graduate 5th grade which was bitter sweet for him. We are moving him to a charter school in the fall which he is not too excited about it. He is going to miss his friends! So while he is excited to have summer break - he also knew he wouldn't be going back in August and that made him sad. We have agreed that he will try the charter school out for a year - following a very traditional curriculum. If after a year it is not a good fit, then he can go back to CC. Michael has started baseball for the summer - games start next week. He is very excited about that.

4 - Jack - I bet school is glad to get a break from my incredibly loving but terribly mischievous young boy. Hate to admit it - but this month he got himself kicked out of school for a day.... he hit someone he thought had stepped on his lunch, then hit another kid he felt was sitting where only the teacher should be. He has been working so hard on controlling himself, using "I" statements to explain his feelings, counting down when angry... all the techniques he's been learning. But, he had a bad day and I had to go pick him up from school. Now I feel cruel admitting this, but I went to Starbucks after picking him up - got myself a drink and he wasn't allowed to get his traditional cup of whip cream. I think that was torture for him - but he did say "I assume I don't get whip cream today".... to which I said "You're right". No temper tantrum, he took it like a big boy but was very very very disappointed. He was sad school was over and says he's ready for first grade... we shall see if first grade is ready for this bundle of energy. He has asked to take tap dance classes - so we are going to look into it - may be a good outlet for those constantly on the move feet of his.

5 - Tom-Tom - what a character! He is so excited to have his siblings home for the summer. I have noticed such a change in the last week since Jack wrapped up school. Tom-Tom and Jack are attached at the hip and it has brought out the tough side in Tommy. The part John and I enjoy the most is being in the other room and hearing them create their fantasy worlds again..... the burning lava, the sharks circling the couches - space communicators, flying ships and all else their big imaginations create for them. Tommy is having the time of his life having them home - despite of course the occasional drama moment most siblings have - right?

6 - Peter - how to fit it all in?? I'll follow my sorority tradition with pro-con-pro approach to this update. First pro: Peter turned 2. WOW!! Two years since he rushed into the world and established himself as a NICU favorite. Two years since the day my heart soared with his birth and cracked with the fear of loosing him. Seems so long ago with my little international traveller - I honestly don't remember my life without him. Peter interestingly doesn't really like sweets - so we celebrated for him! He does however love salty food - so show him a fishy cracker and he is inhaling it!!

The con: and this does technically fall in June but - might as well get it out there since today is my assigned day to be ok being sad. We had Peter's follow up cardiologist appointment yesterday. It didn't go well. His oxygen sats were low, and his pulmonary pressures were elevated almost to where they were post heart surgery. So well out of the "normal" range. As the doc recorded his notes he added Pulmonary Hypertension back to what seems like the never ending list of diagnosis for Peter. My heart broke! We don't know why his numbers are up - and he needs to go back in a month. Peter continues to have a reactive pulmonary bed, so it may be as simple as a combination of the cold he seems to have and the storm that was coming in during his echo. Yep, doc says storms can mess with little kids like Peter making their sats drop and pressure rise. On the opposite end of the spectrum it could be heart/lungs/etc. Today I am just sad - and tomorrow pick back up with moving forward. At this point we are going to get through the cold that seems to have got worse today, we will do an overnight O2 sats study and home, and then in July go back for another echo. We are going to try and schedule an overnight sleep study for later in the summer to see if adenoids/tonsil/other are complicating it further. Doc considered putting Peter back on oxygen during the day - but recognized that would be about impossible. So for now we have doubled his oxygen at night and need to check his sats, etc. What can I say - I'm sad - I really thought we were through this challenge. Doc said we will be dealing with this the rest of Peter's life - he will have to go for regular cardiac check ups for ever. Sort of daunting really. Can't hold onto that "when xyz happens, this will be over". No such thing as really getting over it - but I still hope it will get better and he can lead a normal life off of oxygen. Prayers please!!

The pro: Peter is getting closer to walking!! Now - keep in mind, closer in our world means much longer than with a typical kid.... but he is working on it! He will push anything that moves and getting quite fast at it. He is cruising where possible and bear crawls all over. His latest challenge is working on balance. He will push or pull up to stand and then just stand unassisted. Lasts but a couple of seconds - but he is sooooo proud of himself. And he does it constantly! He just continues to persevere and fight forward. He is trying so hard to talk and trying out sounds. He added "hungry" to his sign language repertoire. He's doing better with eating (knock on wood) - and is feeding himself off a fork. We put the food on the fork - he will put it in his mouth and pull the food off - then he will put the fork down as a sign he is ready for more food on it. He loves steak and any pasta with alfredo sauce.... just like his dad!

Anyway - John, Michael and Alexandra are now home. It is late - I can go to bed knowing all are home safe. Peter is tucked with his oxygen on. Jack and Tommy are finally asleep - but in my room - so John is carrying them to bed. I got no sleep last night after the cardiologist - so hoping for a bit of restful sleep tonight. I am including photos - but think I am missing some on my PC. So please check out the blog again for more photos and will try to get more posted in the next day or so.

Love to all - catherine

Peter is almost two!!

2009-05-02T14:56:00.001-06:00

Peter will turn two in a week. While he isn't doing all I thought he might this time last year - I am thankful for all that he is doing, able to do, and trying to do. This is going to be pretty short as it is a crazy Saturday at the Krause house!! But I had to share these new pics.

John gave Peter a new very short haircut.... and he looks so much older as a result. He is still such a tiny little peanut - people think he's coming up to his 1st birthday, not his second - but oh well. I guess skill wise he is about at that level - so I can see why people would assume that. Next picture is Peter's big heart and naughty side all wrapped together. Peter loves his baths..... he and Tommy could spend hours just playing in the bath, pouring water, and trying to swim. John has been taking a night class every night during April - which made the month a bit crazy for all. Well, I was trying to get through the evening. I told Peter it was bath time and I had to get the towels, PJ's ready, his diaper, etc. In about a split second Peter had climbed into the bath and had the water running. Hmmmm!! I know this could be scary - and while he was naughty climbing into the bath with all his clothes on - I feel like in his little heart he was just trying to help get through the evening. I am very thankful nothing happened in that split second but suffice to say the bathroom doors all stay closed now. Anyway - need to get back to the madness, but wanted to share these new photos.

Also, wanted to ask you to pray for my friend Jaime. His wife was diagnosed with an unusual form of kidney cancer last fall, she has been in extreme pain, but this week lost her battle. I found myself crying for a woman I have never met, and for a wonderful man I am thankful I had the opportunity to work with several years ago. The way he spoke of her was very special - and truly reflective of a great lady. Please keep them, their children and family in your prayers.

Love - catherine

Happy 6th Birthday Jack!!

2009-04-26T18:41:00.000-06:00

Today Jack turned 6!!

"Jack.... born to rock!... and he loves to "head bang" to hard rock music!"

Amazing to think how much as a family we have gone through since he rushed into the world.... literally did rush right into the world. Labor was less than an hour, and our friend Marj rushed over to take care of Alexandra & Michael. John drove like a bat out of hell to get to the hospital. By then I could not stand up straight if you had offered me a million dollars. Nice nurse came out with a wheel chair, and took me for a leisurely stroll through the hospital. Had I been able to sit up straight I would have had a true face to face with her to explain the situation. Suffice to say by the time I got into the room and the "checked" me they realized I was not faking. The doctor came in and Jack rushed into the world 9 minutes after John raced into the hospital parking lot on two wheels. Jack.... our little man with elf ears and a constant twinkle in his eyes. And, now, he's 6. His ears are a little less elfish, but his twinkle has become a full fledged mischievous young boy. Jack has yet to discover his inside voice, can't sit still for more than a second and lives life with a passion most don't learn in a lifetime. It is inspiring and draining all at the same time! His "drama" is exhausting, and a times discouraging.... but his laughter truly comes from his gut and is contagious. His smile lights up a room, and the twinkle in his eye when he is truly enjoying something is so innocent and so wonderful. He loves life, and enjoys staying busy. He can marvel at the smallest bug in the yard, or the biggest animal at the zoo. Deep down inside he loves us all - but we can most see it when he plays imaginary world with Tommy. When our sofa cushions (or what is left of them) become spaceships, or mountains, or castles, or race cars, or pirate ships or volcanoes. When he can create a world of words that sucks Tommy in and they go on wild adventures. And then when he tries to explain the world with Peter so that he won't melt in the lava, be eaten my sharks or kidnapped by pirates..... of course Peter is just Peter and smiles and laughs but does all the wrong moves.... leading Jack the best he can to carry Peter from danger and give him a good "talking to" as Peter smiles and laughs. Now the three of them share a room and no doubt there will be many more times after the lights are out when Jack will again say goodnight to the dinosaurs under the bed or the angels that watch over them when they sleep. He's a cool kid!

Today Jack had a Spiderman birthday party at home. As we planned it out, he actually wanted a Star Wars party - know why? because it is what we did last year and he loved it so much he wanted this year to be exactly the same! I did talk him into changing the theme, but all else was pretty close..... his friends arrived around 2pm and played outside. We then did races, obstacle course and water balloon toss/catch (instead of eggs that ended up all over the yard last year). Alexandra did a "guess what is in the gym bag" team game, and Michael egged everyone on for the pinata. By then the cold front started to come in, so the kids came in and tried the "pin the web on Spiderman" - last year we did "pin the light saber on Luke Skywalker". The kids then had a lot of frosting with cake (my cake crumbled and I kept it together with a lot, lot, lot, lot of frosting). The cake was one layer yellow, one layer chocolate and had a Spiderman action figure on the top. Jack loved it!! I used little candy letters to spell out "Happy 6 Birthday Jack" on the cake..... so of course he wanted a slice big enough to get all the letters in his name. And he can spell..... so there was no getting away with it. Thank goodness he only has 4 letters in his name! Then they moved on to present opening - as each kid took turns sitting in the big chair with Jack as he opened the gift they brought. Jack loved all of them - and I was so proud of my other kids for not getting the little green bug of jealousy like sometimes happens. They all were genuinely excited for Jack and wanted the party to turn our great. Well, all but Peter who slept through the whole event. Kids left around 4. I got a paper plates, cups, napkins, and table cloth. So, in about 15 seconds it was all picked up and thrown out (sorry mother earth) and we could just enjoy.

Pi~nata Time!

Balloon toss

Pin the web on Spiderman

Race time

Cake time!!

Sitting in the present opening chair with too little buddies who call him "Jacky"

Michael and Jack snuck upstairs with a Bionicle that Jack got as a gift, and now he sits on the book shelf in Jack's room watching over their fantasy world. Right now John is getting the kids through the showers, and we are headed down for a family Wii championship..... the one we have been talking about since Christmas! No doubt John and I will be sore and will need to ice up about every part of our bodies tomorrow. But, until then we will enjoy the rest of the day that we celebrate Jack and another year loving him.

Love, catherine

Happy Easter!

2009-04-12T20:48:00.000-06:00

Where have the last two months gone?? My goodness.... sorry I have been so delinquent. My new job is keeping me very busy - but challenged and very happy! Thank you God!! Kids schedules have been a bit crazy too.

Alexandra is in 8th grade, and doing soccer for the last time at Corpus Christi. She also has youth group, confirmation and is in the school melodrama. We are very excited that she got accepted into the college prep HS in town - St. Mary's.

Michael is doing wrestling again this year after some back and forth thought. The first match he lost by quite a few points, so he was not too happy. He came back with a vengeance and has lost only one match since. All others he has won by pinning his opponent in the first period. He's developed this technique that has really boosted his confidence, and clearly works. Since I stress out watching boys wrestle, I appreciate the swiftness of his matches now. His record was finishing the match in 13 seconds - way to go Michael!

Jack's little heart was broken. His "long term girlfriend" Elizabeth has moved on to someone else.... Jack was devastated. He went through ups and downs expected of teenage crushes - but has come to the conclusion that she will come to her senses one day and come back - he just needs to wait. Oh goodness!!

Tommy... finally potty trained!! Jack was a nightmare, but Tommy just didn't care. All the best bribing did nothing to curve his lack of interest. When I asked him what he was going to do when it was time to go to college he would say "Take diapers with me!". But then one day he woke up and decided he wanted to wear underwear and has ever since then. It just clicked..... no trial and error, it was just done. Oh thank goodness! Our budget appreciates only having to buy diapers for one.

Peter.... well, little man is still bear walking about everywhere. He's cut down on wanting to walk now that he is getting faster and faster. But, he pulls to stand on everything, is cruising around on furniture, walls and cabinets. He is still a total peanut (maybe 22lbs) and short.... but tall enough to open drawers and dump them out. Tall enough to reach up on the kitchen counter and pull off bowls and send them flying. His technique should lend itself well to discus throwing, but the bowl shattering on the floor is not a pretty sight. Then again, I was almost brought to tears when he reached over his high chair to the kitchen table and sent flying the ceramic bowl I had hand painted. That deserved angry eyes from me.... but I wasn't able to keep them long as he charmed me with his angel eyes.

This weekend was a big move!! Peter moved out..... that is, last night was the first time since Peter came home that John and I haven't had a roommate!! The crib, changing table and all his clothes moved down the hall and in with Tommy and Jack. So the three little boys are sharing a room. It's a bit crowded, but with Peter's second birthday right around the corner we felt ready to let him graduate. I think he is glad to have a new space to hang, and hopefully it will allow us to get him into a routine closer to the other boys. Peter is a bit of a night owl often up till 11pm or so. Fingers crossed going into longer days he can still start going down a little earlier. John and I need some couple time!!

Think that gets us somewhat caught up.

HAPPY EASTER!!

catherine

Gingerbread bunny house - by Alexandra

Egg decorating with Tio Greg & Tia Brenda.... thank you for organizing it!!

Peter's brush with the law

2009-02-18T21:39:00.001-07:00

So yesterday was one of those crazy days - things going in every direction. As I mentioned Peter is finally at that height where he can reach up and pull things off tables. He was in the family room and reached up and pulled the phone down.... I was in the kitchen when John figured out the phone was off the hook. I found Peter and the phone - without think I just shut it off and put it away. We sat down for dinner and the phone started ringing, and ringing and ringing - no messages being left. Alexandra suggested we answer - but our rule is no phone calls during family dinner. After dinner John was playing with the boys, I slipped down to get some work done, Alexandra was cooking up a Peruvian dish for dinner tonight when the door bell rung. THE POLICE..... not our favorite 80's band - but rather a true officer of the law. I guess Peter had started off his call to China with 911. The phone calls during dinner was the dispatcher trying to ensure all was OK, since no answer she sent out the police. Oh how embarrassing! I knew something was wrong when I could hear Tommy and Jack getting on Peter's case with just that extra volume and glee like he'd been caught doing something wrong. I came up to make sure all was OK as John was saying goodnight to the good man in blue. Jack and Tommy loudly saying "Peter! you called the police!!!". Peter not understanding a word but enjoying the attention. Fortunately we didn't get in trouble for false reporting or anything. Mental note - keep the phones away from Peter. One of our kids was bound to dial 911 some time..... never thought it would be Peter. Good night - HUGS

Peter... from Baby Bear to Bear Walker

2009-02-16T21:09:00.000-07:00

I have been out of touch a bit because the last several weeks have been crazy! Shortly after coming back from Peru I was recruited into a new position at UHC. It is the spot I wanted to land in three years ago - so a dream come true. I am totally excited!! It is no doubt a huge challenge and phenomenal opportunity. I truly believe God knew I couldn't have taken it on two or three years ago.... but here we are now.... and I am so excited. I completed 99% of my transition work last week - which in itself was emotionally draining - to leave behind people that have helped you grow and become part of your life. But, this is life I guess. So now, on to the new challenges, opportunities and joys. Please keep me in your prayers as I move into this.

And speaking of challenges and joys - Peter has graduated from "Baby Bear" to "Bear Walker"!! I had mentioned to you that when we had Peter's PT session at The Children's Hospital in Denver - Pat Winders had told us to start working on developing walking skills. Well, late January the special walker we wanted for Peter arrived. Peter took to walking like a duck to water. So if you put your hands under his arm pits or sometimes hold his hands close to his torso he will take steps.... and can walk all around the house. You can tell the concept has clicked and he wants to do it. In addition from one day to the next he mastered the concept of turning and pushing to go down the stairs. We thought he'd never get it - and all of a sudden he just did it. So now he is mobile through all three floors of the house..... nothing is safe! Especially now that he is getting a bit taller and can reach up and pull things off of tables. We have to remember to stop clapping at all that he does because soon he will be a tornado on the loose.

Anyway - Peter and the walker. It goes a bit fast for him and he tends to just plop. So Tommy came up with the best solution - he sits in the walker and lets Peter take him for walks..... which generally means walking straight until you hit the wall, hit the wall, hit the wall, and hit the wall if you get my drift. Here are the boys! One day he'll learn to turn the thing and then Tommy better hold on tight because I can see this becoming a wild ride some day.

And then there is Peter's graduation to Bear Walker. As you know Peter has been master of the army crawl for about a year now. I think in his effort to figure out how to actually walk he has figured out the bear walk. So he stretches all his limbs and crawls down the hall like a bear. It is so cool to watch. Then he will push as if wanting to stand - but since he doesn't straighten up his body he just sort of keeps going and lands on this bottom. A couple of times he's pulled up to stand on furniture or the wall and will then let go as if trying to balance himself. Lasts but a split second - but hey! he's trying. His balance isn't great yet - but I think the fact he has the concept and is trying is truly amazingly phenomenal!!! Here's Bear Walker.

That is about it from this corner of the world right now.

Love to all,

catherine

Peru pictures... finally!

2009-02-01T20:08:00.000-07:00

About 2am and we are leaving the airport. Our flight to Lima was delayed and we are tired!

Good morning Lima!!

Monday we slept in and then went out walking through Miraflores for over 5 hours....it was great to see all my old spots.

...and new spots - here is Peter at Starbucks with my mom! He can play with a green straw for hours!!

Outside my old school - San Silvestre. It's changed from the big old wooden doors I used to walk through. I hope next time I can go inside and find those spots with so many fond memories.

Tuesday we loaded up and headed down to the beach house in the afternoon.....

Introducing Peter to the Pacific Ocean..... I forgot how loud it is for someone seeing it for the first time. I was like music to my ears that washed every last ounce of stress away. I even slept with the window open - so that I could fall asleep to it and wake up to it. I didn't realize just how much I missed the crashing waves.

Wednesday morning was beautiful!! You can see it islands right off the coast that look like a stone whale.

... had breakfast with Grandaddy and then headed down for the morning at the beach

Then we headed down to the hot spot of "Asia" beach so that I could have my most yummy chicken in the world at the "Granja Azul"

We got home late to just enjoyed cheese, crackers and a glass of wine while watching the night waves roll in

Thursday we enjoyed our last day at the beach.... Peter enjoyed digging the sand and putting shells in and out of the tub. Then we headed back to Lima where I got together with some friends.

Friday.... Granny's big birthday!! We started off with lunch at Punta y Sal restaurant - oh yummy yummy cebiche.

The birthday party at the Phoenix club! Granny looked great - she was serenaded by Mariachis that she loves - but of course having Peter there was the best gift...

Saturday we did my tourist shopping - the enjoyed another of my favorite dishes for dinner - anticuchos with an Inca Kola, with picarones for dessert.

The we took a bus tour of down town Lima at night, and visited the biggest water fountain park in the world....

Sunday did a bit more shopping before catching the midnight flight back to Colorado Springs

Good night Lima...... good morning Colorado!!

Catching up with January

2009-02-01T19:38:00.000-07:00

Where did the last 3 weeks go?? My goodness.... unbelievable that Peter and I got home three weeks ago this upcoming Monday. Things have been non-stop go since then!! And suffice to say the proof is in the laundry. If I don't do at least a load a day I am messed up - and I have not done a load a day.... so right now I am battling Mt. of Dirty Clothes!!

So to catch up for January.....

a) PERU - I miss it so much!! The food, my friends, my parents, the beach, the sound of the ocean, the warmth....home! Peter and I both had a great time and really could have used a few more days there. My last day there - the day of my planned launch off the side of a cliff attached to a parachute did not happen, there was no wind. So we shall save that for next time. I am going to attach photos tonight even if I am up till midnight!

b) Michael's birthday - our man is double digits of one - I can't believe he is 11, and to me a spitting image of John in every way. I was glad to be home to celebrate, even if still worn out from the trip. Michael picked Carraba's for dinner - a family favorite. Of course, we left with a collection of pizza dough creatures.

c) Ice Fishing - the weekend of MLK, John went on his annual ice fishing trip to the Gunnison area. John has been doing this pretty much since we moved to Colorado - but this was the first year Michael went with him. They headed out on Friday afternoon and fished Saturday and Sunday. While John was skunked (did NOT catch a thing!) Michael was more successful actually catching the biggest fish one day - way to go Michael!! They did stay up an extra day this year, and on Monday went skiing - first time for the season. I think Michael came back with a bruised behind, but enjoyed every minute of his weekend with John.

I stayed in the Springs with Alexandra, Jack, Tommy and Peter. They were wonderful. My relax came when I met my friend Anne for Starbucks and we spent hours walking through the shops checking out all the sale items.... it was glorious!! The kids and I worked on some projects around this house, had too many trips to Wal-Mart, but ended the weekend with a fun afternoon at the zoo.... it was HOT!!

d) Michael - basketball season has started. Michael really enjoys the sport and it really gives him an opportunity to bond with some of his classmates. The first game was even attended by three of the girls as impromptu cheerleaders..... the boys won't admit it, but I think they liked the attention.

Aside from that, we have been running around like crazy. Work is hectic, school is hectic, and schedules are hectic. Last night we enjoyed dinner with a family who received a pre-natal diagnosis - just like we did with Peter. I think we've made new friends! I really enjoyed their company, and looking forward to meeting their little girl when she comes into the world about a month or so from now. Tomorrow I start back up with the Colorado Springs Down Syndrome Association - and back into figuring out how to improve the opportunities for our kids. Our "Fostering Hope" group from church just got a new family to support - so I must brush off my casserole recipes and start mass producing meals again. I hope they enjoy them as much as the last family did. So, I can see 2009 will continue to fly into full swing. This being Alexandra's last year at Corpus Christi also presents new experiences for us.

I hear the dryer beeping.... another load should be ready! I am going to cut this off for now and attach pictures shortly.

God bless,

Catherine

ps. My friends in Peru talked me into Facebook....so if you are out there look me up! I could always use a new friend!! John is also out there - in case you prefer to be his friend :-)

Quickie update

2009-01-10T21:23:00.000-07:00

I have been completely delinquent - so much for regular updates huh??!! I've just been having way too much fun in Peru - and Peter is the most amazing kid ever! He has just rolled with it like a pro, and is obviously having a great time. I have close to 500 pictures taken, so I do need to weed them out and post a bunch. Peter and I leave around midnight tomorrow to head back to Colorado, and will get there mid day Monday. I promise to post a full update and pictures once I get settled in. Quick synopsis of the trip -
Monday - walked the district of Miraflores within Lima and enjoyed a relaxing evening at home
Tuesday - slept in! we were tired!! then headed down to "Pulpos" where my parents have a beach house. We enjoyed a little time by the water, and then a dinner on the balcony overlooking the ocean. Late that night my Uncle Peter arrived from England to enjoy the summer here.
Wednesday - enjoyed the beach in the morning - took my first dip in the Pacific Ocean and tried body surfing again! Tumbled in the waves and enjoyed the sand between my toes. Then headed down to "Asia" beach where there is an incredible little shopping/dining area - and had my favorite chicken in the world at the Granja Azul restaurant. Got home late, so had wine with cheese and crackers as we watched the waves break.
Thursday - came back to Lima and had a wonderful evening with some of my old friends from school - San Silvestre - British girl's school I attended. I swear my friends never age because they look like they did when we graduated twenty years ago!
Friday - yes, I'm spoiled.... manicure and pedicure day! Amazing "cebiche" lunch at a fish restaurant. Then helping get things taken care of for my mom's special party. In the evening we had the party at the local "Phoenix Club" and it was fabulous! I saw people I hadn't seen in 20 years. My mother was the belle of the ball, followed closely by Peter who was the special guest of honor. These wonderful folks have prayed and hoped for Peter's good health - and seeing him brought so much joy to them. My Tia Janet (Aunt Janet) was even on the floor chasing after people as he crawled around. It could not have gone better!
Saturday (today) - had another gorgeous run along the beach.... oh it was beautiful!! Then we visited with Nilda - my mother's reflexologist who had a young daughter with DS. She was the pillar of strength my mother needed here after our pre-natal diagnosis and the health challenges after Peter's birth. Unfortunately her daughter died unexpectedly from an infection - so holding Peter was bitter-sweet for her. Peter took to her instantly and gave her the hug she needed. Fit in a little shopping and more great food!! Including one of my favorite desserts - "picarones". A deep fried donut made of squash and sweet potato batter and drizzled with a peruvian syrup made from crushed brown sugar cane. Yummy!! Then we took an almost 4 hour bus tour of historic Lima and a local park with amazing water fountains.

Tomorrow we have a lot of little things to do - a little shopping, washing and packing - but, if the weather is good hope to go para-gliding right off the cliff in front of my parents apartment. A bit scared of jumping off a cliff - but hoping the weather will be right to do so.

Anyway - there is a quickie update. Can't wait to share the pics with you and more details on Peter's experiences. I just have to say - Peter is the perfect traveller!!

Love -
catherine

We are in Peru!

2009-01-05T20:23:00.000-07:00

Yesterday was a very long day! We got up early, early, early to leave the house at 5 something a.m. There was about 4 inches of snow - so I was afraid our flight would be delayed. John took Peter and I down to the airport. Our flight was not delayed, but we spent about 45 minutes in line on the runway waiting to be de-iced. We had a long lay over in Houston, so was not worried. We made up time and landed in Houston at about 11:30 am local time. We strolled around, ate lunch, and strolled some more. Our much anticipated flight to Lima ended up being delayed, and delayed again, and then again. I was trying to keep Peter awake until we boarded, but he passed out in his stroller. We finally took off about 2 hours late. They made up a bit of time on the flight down, but we were still late. Peter was the perfect passenger! We sat in a row on our own and he was easily entertained. We walked the aisle a few times for a break, and he slobbered all over the TV screen in the seat in front of us. I was exhausted, but Peter really was an angel. When we landed I loaded him up in the stroller and headed to battle the line of immigrations. Next thing I knew I was getting whisked down a fast lane by the people who would no doubt be in line for hours. I got checked out , stamped, suitcase and was not even selected for customs check. We were out in no time at all, and at my parents place little before 3am. The door was decorated, the apartment perfect - with priceless views of Lima and the Pacific Ocean at night. And I got to settle in eating a "mousy mousy". When my brother Roger and I were kids, my parents would take us to a local bakery. Roger and I would always pick the pastries that were decorated to look like little mice, and we thus dubbed the bakery "The Mousy Mousy Place".

Yesterday Peter and I slept in. We much needed it. In about 20 minutes Peter warmed up to the new setting and set off to explore the home. Nothing is safe! But he has been gentle with Silver the cat. After lunch I decided I wanted to walk Miraflores - the district of Lima I grew up in. We loaded Peter up in the stroller as my dad and I headed out. We walked along the coast, through shopping sections, parks, and finally to the meeting location with my mom - Starbucks! :-) We had a drink, got a little groceries and then headed out for the last leg of our trip. We walked through my old neighboorhood and I saw homes of old friends, the park I learned to climb tress in and my old home. We then walked a few blocks to my old school which we walked around. Hard to believe it has been over 20 years since I would put on the ugliest school uniform in the world and walk to that same school and through those same gates. That was my home for 12 years - so many memories, wonderful friends, quirky teachers and moments that make up who I am today. We finally made it back to the apartment after 7pm and settled down for more amazing views of the ocean, the sound of the breeze and the sea salt in the air. Truly magical!

Last night was a late night as Peter is on an eating strike, and decided to get a second wind late at night. Finally we shut all the lights off and he got the hint. This morning I decided to go out for a little walk/run.... it turned into almost an hour and a half of exilirating exercise. I ran along the top cliffs of Lima, then down these very long stairs to the beach area and then I ran for what seemed like miles. I ran on the beach, past some old favorite restaurants, watching the surfers head out to catch some waves, and the whole time breathing in the ocean breeze. Then it was time to climb what seemed like a mile of stairs back up - that was a challenge. By then I was a few miles away from my parents place. After catching my breath ran the whole way back. I was red and sweaty and felt GREAT! It is so nice to have so much oxygen and the difference in energy levels is amazing.

Sorry no pics yet - need to dig out some cords from my dad to attach the camara. We are headed out for a couple of days at the beach house - so it will likely be Thursday before I get the pictures all posted. Thursday night I'm having dinner with some old class mates, Friday night is my mother's birthday soiree at a club, and then the weekend before I head home.

Better run so that we can get on the road -

love you all!!
catherine

Merry Christmas & happy end of 2008!

2008-12-31T21:33:00.000-07:00

It is December 31st, 2008.... where has the time gone? Today John said to me "Remember Y2K?" It seems like so long ago. It was my full time job helping our company prepare and test and test and test some more for Y2K. And honestly it was so anti-climatic when it came and went. And here we are, 9 years after computers were supposed to stop working, we would have no water and the world would come to an end. I wonder sometimes how the people who bought bunkers out in the plains feel today. Anyway, I digress because I am tired and a simple thought process seems quite challenging right now. And of course the kids want to stay up to ring in the New Year. I think we will be half zombies at Mass in the morning.

But, I did want to update the blog and let you know what a wonderful Christmas we had this year. Unexpectedly John's parents were in town to help my brother and sister-in-law move to a new home (a totally awesome, beautiful dream home with an amazing kitchen!) so we had a wonderful big family Christmas.

Christmas Eve we had a small dinner - just John, me and the kids - and we had ham dinner. I grew up in Peru and having a big hot meal on Christmas (in summer) just seemed insane - so we always had our dinner on Christmas Eve. John and I adopted a modified version of this Mortimer tradition. I cooked dinner while John and the kids delivered all the goodies we had baked. We enjoyed dinner, and then went to Mass where Alexandra was Altar serving. We came home and in a tradition John and I created for the family - the kids got one present to open. Now, the get excited every year but they know exactly what it is - pj's!! Two reasons - a) they normally need new winter pj's by this time of the year; and b) they are guaranteed to be clean and decent in pics from Christmas morning!! We did our Advent readings and off to bed we went.

Christmas morning we had promised to keep the kids out of the gifts until John's parents could get here to celebrate - which was around 9am. Fortunately the little ones slept in but the big ones hid in the basement to contain their excitement. Grandma is always very generous and stocks the tree abundantly. The kids love this! They know that from John and I they will get three gifts.... after all, we are celebrating Christ's birth and Jesus himself got three gifts. Another family tradition I guess! Usually the gifts are an outfit, a book or movie, and a game or something fun. Then Santa brings the kids one big gift each. This year Santa gave in on their repeated request for a game system - so he brought one gift for the kids to share - a Wii game system. Talk about excitement, and screaming and jumping and now endless hours of playing Wii tennis, bowling, baseball and Mario-something-slugger. We were also joined by my brother and sister-in-law (Greg & Brenda) and together enjoyed a wonderful turkey dinner. Brenda has the reputation of making the best deserts in the family - and she baked a delicious cake and yummy cheese cake.

Now to share some of the kids favorites this year -

Peter - light up Christmas socks -

Alexandra - snicker doodle scented candle

Tommy - the remote control helicopter that Jack got from his godparents

Jack - the heli, a foam disk shooter and a maze book + computer game

Michael - hands down...the Wii

And on an embarrassing note I must confess my own lack of being in good shape. This last summer after Peter turned a year I started exercising again. I went out every morning and was doing 4 - 5 miles a day part walk and part run. I felt great! I lost weight! I felt good!! Then school started and my life went crazy. I didn't have time to exercise, I never got back on top of laundry and felt like I was constantly flying by the seat of my pants keeping up with home, kids, husband and work. Ahh! Well, I recently recognized my need to start exercising again - so I've been getting up early before everyone else to fit in prayer and exercise. I have become somewhat fanatic in the last couple of weeks in my useless attempt to look more like Heidi Klum before my trip to Peru. I am failing terribly despite being up to 6 miles a day, eating little and drinking lots of water - I'm cursed! Anyway, I digress again. I was started to feel more comfortable that I was getting "fit" again. Michael challenged me to the Wii. "Sure" I told myself "just a kids game - how hard can it be?" Well, he kicked my @$$ at tennis which was embarrassing. I decided to move onto bowling - you know - a sport more suited for us maturing parents. Well, he double kicked my @$$. My competitive edge kicked in and I was bound a determined to master the bowling. In a less than stellar parenting move, I sent Michael off to bed and stayed with the Wii. I bowled for an hour trying to beat Michael's 203 score. I maxed out at 185. It was midnight and I went to bed. I should have iced my shoulder because my right arm was so sore I could barely move it for three days. I have not yet taken on the Wii again!

Anyway - it is 2009 in half the world, so I better wrap this up and just say THANK YOU GOD for a wonderful 2008! please continue to guide us and bless us in 2009!!

Love,

catherine

My Dream Kitchen?

2008-12-23T22:51:00.000-07:00

Ask me how I would describe my dream kitchen - and likely I would tell you all about the design. Almost opposite of what we have now! I dream of a big kitchen, center island, country sink, double oven, etc. You know - the kitchens we see in TV or in magazines. But, reality is I have a small galley style kitchen that requires creative packing to get everything into it.... especially since I have somewhat of an addiction to small appliances - I will unfortunately never have enough!

This is what my kitchen looks like right now.... and yes that is a glass of well deserved wine after a long day!

So, this is not how it looked all day. And that is where the true dream kitchen comes in. While my kitchen is not my fantasy kitchen design, today it was my dream kitchen. All my kids piled into our little kitchen - each with their well-used and somewhat stained apron on. Each with their own little project. But, each project perfectly intertwined with every one else's project. The perfect timing of baking. And, through it all there was laughter, teasing, a lot of fingers "taste testing" and a smidgen of drama. Would hate to imply we are a perfect TV family because Lord knows we are not! (You will see the evidence of taste testing below)

But, at the end of a long day, and a kitchen that took over two hours to get free of a couple of loads of dishes, dropped M&M's, finger smudges and stuff I don't even recognize - we have a recipe for family togetherness and a lot to show for it! So here is a bit of the magic everyone brought to the kitchen -

Alexandra made peanut butter and swirl kisses cookies:

Michael whipped up a double batch of brownies using the same recipe I learned in summer school at his age:

Jack made is very own double batch of M&M cookies. He also helped mash the bananas for our banana bread:

Tommy carefully made a batch of vanilla ice cream and lent his expert "taste testing" to everyone's special projects:

Peter was in and out of the kitchen sprinkling us all with love and giggles. And I made up another batch of blackberry jam (yes - the berries were still on sale!).

We tied all our projects together and have goodies for our neighbors that we plan on dropping off tomorrow.

So, back to the dream kitchen - today I had my dream kitchen! I had the kitchen I close my eyes and dream of when I am at work missing my kids like crazy. Today we spent the time together creating with our hands - and at the end of the day (even if super late) can put our feet up and smile.

God bless you all as we continue to prepare for Christmas.... and let our recipe for life this week remind us the real reason for the season. As my kids say - Happy Birthday Jesus!

catherine

Peter - CarePage - December 22nd, 2008

2008-12-22T20:49:00.000-07:00

PT @ TCH -

Peter had his physical therapy assessment at The Children's Hospital - Denver today. We again were able to see Pat Winders who I told you about many months ago. She is the number one PT for kids with DS in the world. She is so inspiring and so positive! She was thrilled with Peter's progress since last time she saw him. He has come such a long way. I think she was equally as excited to see him off of oxygen and getting so healthy. She was surprised at his agility and speed in the army crawl arena - that kid burns rubber - think he gets it from my dad who used to race cars.... love of speed runs in the family. Alexandra and Jack came up for the session too - Jack wanted to escape Colorado Springs, make new friends and unfortunately spilt water all over the computer in the evaluation room. Oops! The thing was still running when we left - so hopefully no bill for that repair - yikes! He was his normal chatty self - he really knows no strangers. Alexandra really wanted to fully partake in the session and share her observations on Peter - but was frustrated that Jack needed some entertaining at times.

Peter now has his new goals to get to the next level - the first being working towards independent walking. She wants him to take steps forward. We've worked on it some up until now, but he somewhat resisted it, and keeps his knees locked. Pat said we shouldn't worry yet about the locking knees or position of feet since he is at this time insecure and not pulled together. He doesn't have good balance at this time for walking, but she believes that as he gets stronger and more confident in his moves he will take off like he did with the army crawl.

Pat also wants Peter to work on cruising to the right. While he doesn't really enjoy cruising, he will if it is to reach something on the couch - but generally he will go to the left. We need to work on going to the right. She also wants us to work on crawling on all fours. I've noticed recently that he has been pulling his knees in more as he army crawls - but he doesn't want to push up and walk his hands. She used the same technique that Kerry (our PT) has used - so we need to work on that more at home now.

The last thing we need to work on is reinforcing the turning and sliding to come down stairs or off of furniture. Right now he does pretty good coming off furniture, and sliding down if he is half way climbing the stairs. However, if he is already at the top he won't turn onto his tummy and slide down naturally. She talked about using single word commands per se. So instead of saying "now turn and climb down the stairs" we should just say "down" and point. She called it "labels". So single word labels that let Peter know what to do. So we need to teach him that down means "I turn onto my tummy and push backwards". Admittedly this was somewhat of a new concept to me. I know that I have used single words or short commands in the past with the other kids, but by nature I am a pretty chatty person (I know - gasp - what a surprise! catherine is NOT a person of few words??!!). As a result I tend to talk a lot to Peter. I guess I just figured he was learning vocabulary and sounds in the process of me talking to him. And I am sure he is - but now I must rethink when to be chatty and work on sounds and vocabulary, and when to use single labels to teach an action or response. As a side note - our older kids teachers have often commented on their vocabulary as young kids - don't take me wrong- they are not users of the finer form of English - but they used a lot of words to communicate or tell stories. I think that is as a result of John and I both NOT being people of few words. Hmmm.... I guess that explains Jack and his addiction to talking.

Anyway, I digress once again. But, honestly Peter is doing great! She was gracious to not compare Peter to any other child - a sign of professionalism if you ask me - but I would suspect he is in the middle of the pack. Which honestly is fine with me.... as long as he is progressing the speed is less of an issue. My pediatrician has always told me speed is not reflective of how far you get - and some kids are slow persistent little turtles that will eventually surpass the hares in group. I like to believe that is Peter..... the little persistent bear (not turtle) who smiles and keeps trying and trying and trying. He obviously isn't the fastest but he might just go the furthest!

Here are a few pics from the session.

Love to all -

catherine

Here Peter is playing on a cool toy which she would gentle push to make him walk. Since he really didn't realize he was doing it he was more cooperative - but she still positioned behind him so that he wouldn't flop on his butt like he does when he doesn't want to stand

"Seriously?! you think I am going to walk??!! ha ha ha!"

Putting a motivator in front of Peter (the toy) at a higher level - so higher than floor level which he could army crawl to, but lower than a couch which he would just cruise or reach standing. You can see the positioning, the encouraging forward and celebrating the victory.

"If I go floppy can I stop?!"

Beautiful sis Alexandra

Alexandra's Birthday Party!

2008-12-19T22:05:00.000-07:00

Alexandra had her birthday party this evening. It was simply ten girls having a great time! The theme was a Christmas based cookie exchange. We changed the rules a bit, but each girl brought two dozen cookies - and almost all of them clearly made the cookies themselves which was exciting to see. The evening started off with just a lot of laughter and goofiness - then the girls enjoyed pizza dinner with salad. They headed down to the basement to watch "Mama Mia". Sidebar - we did question having girls this age watching it but each of the parents was fine with it - we did have some back up choices should the underlying story line be uncomfortable for some parents to address.

I think with this group of teenage girls Edward (from Twilight) has temporarily been replaced by Skyler in the movie. The girls snuggled up under quilts and watch the movie. I could occassionally here them laughing, uhh-ing and the breaking out into dance. Funny how Abba music lives on!

While the girls were watching I cleaned up the dinner table and set up the cookie part of the party. I made party favor bags with one of each cookie in it, and then sealed it with a sticker and an old fashion rusty metal bell ornament. I'm biased.....I thought the table looked great with the cookies and the gift bags.

Took about 3 seconds, maybe 5, for there to be flying cookies, crumbs and chugging down of hot apple cider! Tommy and Jack joined the girls for this part of the event - but they can not be blamed for the mess left behind by a feast well enjoyed.

Alexandra said she thought the party went off really well - which is really the seal of approval any mom needs! She had friends from school as well as outside of school at the party - but they did a good job integrating with each other and making sure no one was left out. Not sure what silly game they were playing but I've never seen so many teenage girls giggle, laugh, and chase each other up and down the stairs like they did when they were in Kindergarten.

I'm exhausted - so off to bed.

Good night!

catherine

Merry Christmas & A Blessed New Year! (yes - our family letter now online!)

2008-12-18T20:10:00.000-07:00

From our family to yours - we wish you a wonderful Advent season, a very Merry Christmas, and a joyful 2009!! In tradition of our letters - here is a little something on each of our beautiful children this year.

Peter - well, what a year! He has really grown and got quite strong. He is sitting and pulling to stand. He is army crawling and climbing onto stuff. He can sneak up the stairs and is working on coming down. He is saying a couple of words - and signing others. He is eating and enjoying it. He still prefers puree food with textures, but he will feed himself finger food. The greatest gift of 2008 was healing - his lungs are getting healthier each day! His pulmonary hypertension is resolved and he is now on oxygen only at night! Wonderful!! We know that 2009 will bring so much more development and we are excited to see him continue to grow and challenge himself.

Tommy - he’s three now! He is such an interesting, quirky, funny and incredibly smart little boy. He doesn’t want to potty train - but we are confident he will before college! He loves his role of big brother to Peter, and is teaching him much. He has a very active imagination - and with his major accomplice: Jack - can turn blankets into forts, cushions into bridges, chairs into trains, and invoke guardian angels to battle in the middle of the night. He shares a room with Jack, but sometimes finds himself in our bed in the middle of the night - when I asked him why he said Jack’s dinosaurs were too noisy and waking him up at night. And, when in doubt the remote control makes a great phone for calling “friends”.

Jack - our little future Bronco’s player turned 5 this year. He graduated up to Kindergarten and talks about school every day! He is still “dating” Elizabeth whom he plans to marry one day and they plan to have 8 kids! He took football camp this summer and had the most fun of any kid. He has the fastest little legs in the west - and loves running into the wind. The volunteer coordinator at school is recruiting Jack into track in first grade because of his speed and stamina..... during a school fund raiser he out ran most of the older kids. He enjoys being read to before bed. He prays at night for another sister - a testament to how much he loves Alexandra.

Michael - now in 5th grade! And turned double digits this year. He will be 11 in January and is turning into a strong young man. His sport of choice seems to be basketball, and he really enjoyed some camps this summer. He visited Peru earlier this year, and experienced a world so different from Colorado. While on a trip into the Amazon jungle with his grandparents, they encountered some rioting during a national strike. Boulders on the road, burning trees and being surrounded by an angry mob that threw rocks at their car was more than frightening. They obviously eventually got home safely - but I think Michael has decided traveling the world might not be for him!

Alexandra - she is wrapping up middle school and will be going onto high school next year. Where have the years gone? Seems like yesterday she was in our arms as a newborn. She is now 14 and keeps growing like a weed. She is easily 5’9” and not showing a sign of slowing down. She played volleyball again this year, and continues to improve and develop. However, she has found her true joy is acting. She took some acting camps this summer and this fall was in a local production of “The Lion, The Witch & The Wardrobe”. She hopes to participate in more plays and get involved in drama while in high school.

John coached the Colorado Springs School boy’s golf teams again this year. The boys have such admiration and respect for John - it is great to see what a positive influence he has had on them as players and individuals. One of his players made it to State Championship this year which was remarkable for his second year. They are looking forward to doing even better next year under John’s guidance. John continued to teach privately and will possibly pick up a girl’s golf team in 2009. The highlight of the year is always his ice fishing trip - which is coming up in January. So should you want to escape for a weekend of camaraderie, fishing, grilling, and of course a beer - pencil it in for President’s Day weekend and call John!

Catherine continues to work for UnitedHealthcare and is not sure what 2009 will bring to the industry. She volunteers cooking meals for a local foster family, and recently was elected onto the board of the Colorado Springs Down Syndrome Association - she is very excited to develop awareness in the community for our children, support for new parents, and help promote understanding in our medical community.

Peter and Catherine (if all stay healthy) will be headed to Peru in January to celebrate a milestone birthday for Catherine’s mother. While only going for a week, they are planning some relax time on the beach. A much needed break after a hectic 2008.

We hope that this finds you well - and that 2009 will bring you much joy, laughter, love and blessings! We hope if you are in Colorado you will look us up!

God bless,

John, Catherine, Alexandra, Michael, Jack, Tommy, Peter and Angel-Dog

Michael's First Jam!

2008-12-16T22:05:00.000-07:00

Just a quick post to share that we now have 3 jam makers in the family. I learned from a dear friend (Barb) several years ago and it fast became a family favorite. We are besides ourselves when berries are on sale - as they were just recently at our grocery store. I stocked up on Raspberries and Blackberries to whip out a quick batch. Michael has in the past helped me crush the fruit, and offered once again to help tonight. I was cleaning up from the raspberries and getting ready for the blackberries. Well, one thing led to another and Michael made the batch himself from beginning to end.... and he had fun doing it! Alexandra is hoping berries will be on sale again soon so she can make more, and I hear John in the other room saying he wants to help. It is just one of those warm and fuzzy moments knowing you've shared something your children will take with them and teach their kids one day. Once Jack, Tommy and Peter all learn how to make jam we'll be able to open a jam store! And it all started with Barb teaching a group of ladies how to make strawberry jam four years ago! Thanks Barb!!

Good night -

catherine

Happy 14th Birthday Alexandra!!

2008-12-14T21:51:00.001-07:00

Wow - our daughter is now 14 years old! It is hard to believe it has been that long since she was the bundle of joy in our arms. I still remember being in the hospital with her in my arms as if it was yesterday. She was so perfect in every sense of the word. Our hearts exploded with joy and we thought we would never love that much again. We were wrong - we've loved that much and so much more four more times. With each day our capacity to love grows, but it did all begin with the first sight of Alexandra - truly love at first sight!

And here she is today - amazingly beautiful at her statuesque 5' 9" slender self. She is smart, she is funny, she is sensitive, and compassionate. She cries for those hurt, and laughs at silly faces. She makes mistakes, but she learns and moves on. She is a daughter, a sister and a friend. Alexandra brings us more joy than we thought imaginable back on December 12th, 1994 when we held her for the very first time.

Friday we followed Mortimer family tradition - pulling everyone else out of bed in the dark. With gifts in hands and sleepy faces, we trotted into her room singing happy birthday! We watched Alexandra uhh and ahh at her gifts - but most impressive was her true joy at the "coupon book" Michael made. We have dubbed him "wonder thumbs" because of his masterful back massages. Thoughtfully he cut several pieces of paper in the shape of his hand. He stapled them together and made a coupon book for Alexandra to get the back massages she begs for daily. The off to school she went. Friday night we enjoyed a raspberry ice cream cheese cake (if that made sense) and then she curled up in front of the TV and finally watched Narnia's Prince Caspian.... thank you Tia Brenda for knowing exactly what Alexandra wanted!

Our family tradition is to let the birthday person pick a favorite restaurant for dinner. Since we don't eat meat on Friday's she decided to wait till Saturday. When the time came we went to a small local BBQ restaurant named Slaytons. She enjoyed her teriyaki wings, onion rings and a 1/2 slab of ribs she shared with Michael. The atmosphere was very relaxed, and honestly a much needed break from the normal hustle of the bigger restaurants. She had ice cream and peach cobbler with a candle for desert and then we came home.

Today Alexandra and Michael Altar served at the 11am Mass. Shortly after that we went to a mother-daughter tea at the house of our friends the Ambuul's. Veronica has led the Leaders Now program that Alexandra enjoyed - and today was their graduation. It was so nice to relax, share some laughs and share yummy yummy goodies!

We love you Alexandra! We are so proud of you princess!!

love,

mama & papa

ps. Other notables this week - Jack lost his first tooth. The Tooth Fairy brought him a buck since it is his first - he feels rich because that is 100 horse rides at King Soopers! Jack was most excited that when he smiled at his girlfriend Elizabeth that she noticed the bottom tooth missing. Jack & Michael both performed at the Corpus Christi School Christmas program. Peter's passport arrived..... so we have 3 weeks to keep him healthy so that he can go to Peru!

Jack sans bottom tooth!

Jack in the top middle being silly.... his girlfriend is in the top left.

Michael in top middle in plaid shirt (too happy!)

Crazy Busy!!

2008-12-07T20:05:00.000-07:00

Talk about a crazy, busy, fun, joyful and exhausting weekend!!

John and I looked at the calendar Friday wondering if it was possible to do any more this weekend than we had scheduled. Saturday morning started off early with John's men's group - an event he has enjoyed for many years and gives him time to be with other men and talk about living lives as honest Christian men.

He got home barely in time to race Michael down to basket ball practice at the school. Season is starting soon and Michael is beyond excited. Last season he did so well - as his coach put it "he's a scrappy player" who can just get in there. Nothing glamorous, but down and dirty hard work and persistence. Well, both coaches have talked to John indicating they would like to have Michael on their teams and his potential. Michael so needed that boost to his confidence - and he has brought it up half a dozen times this weekend. Each time his eyes sparkle brighter and brighter.

While Michael and John were out, I was prepping the house for weekend activities and guests. This can be frustrating as I swear I have little tornados that follow behind me and mess up the room I just cleaned. Bless John for bringing me a Starbucks! (Kids call it "Mama's happy juice") Schedule was in my favor fortunately as I was able to slip in some baking that needed to be done for the weekend - and just did double batches.

No sooner was Michael home from basket ball that John raced Jack out for a birthday party clear on the south side of town. Jack's girlfriend Elizabeth was turning 6. The party was princess theme - as evident from the invitations in the shape of pink crowns. Jack is so devoted to Elizabeth that he even said he would wear pink if that made her happy. He was the only boy at the party - but that didn't seem to bother him at all. He and Elizabeth are very fond of each other and Jack was thrilled to help her open her presents. He recounted the joy she had with each present that she opened. Now the night before I thought we were buying out K-Mart, but he said it was just right. He even got her a "birthday girl" crown with complimenting earrings, which he said she wore proudly! He had a great time and was bummed to leave. John took the opportunity of being on that side of town to get a little work done on the car as he could hear some funny noises.

By the time he got home, folks were pulling up for the Down Syndrome play group we hosted at our house. We had wiped down the play set for kids to play outside, but the kids entertained themselves with all the toys in the tub in the family room. The kids ranged from Peter at 18 months up to Kara at 9 yrs old. Now, Kara developed quite a crush on our handsome son Michael and followed him everywhere. She was not deterred by his less than gracious responses at time - and they enjoyed basketball in our drive way. For us moms plus John it was a great opportunity to get to know each other better, talk about so much - food allergies, doctors, schools, milestones and ultimately how blessed we are with our children.

Some of the mom's during the playgroup:

Jack making new friends with Kara

Peter chilling with a book during the play group

A little reprieve for a few hours, and then John and I had a date at an Advent party. Our friends the Wilmes' throw a great party! Yummy food, lots of talking and for me a tour of their beautiful new home.... it is so big! I didn't get to chat with everyone I had hoped to talk to - but enjoyed the food, company and a nice glass of wine. Peter came to the party with us and he had a great time making friends with the adults - and a little concerning was that he went after the men with bear bottles..... hmmm, not sure what to make of that!! We didn't get home till very late and literally fell into bed. Alexandra and Michael had stayed up late watching a movie - so to my advantage I had Michael give me a back rub as I fell asleep. I have now dubbed him "wonder thumbs" because it was hands down the best back massage ever!!

The life of the party!!

This morning Alexandra and Michael served at the 9am Mass. The three little boys were FULL of energy. Oh bless the people around us. And we were blessed, they were all gracious folks who had nothing but wonderful compliments on the boys. Of course they are so darn cute, it helps when the are moving around like mexican jumping beans. (Side note - remember those mexican jumping beans you could pick up next to cash registers in the 80's? - anyone know how those work? call me dork but I thought they were really cool).

We got a break from cooking lunch which was a much needed break. We had the Colorado Springs Down Syndrome Association Christmas Party. It was hosted at a local hotel and it was so nice to just sit. As John pointed out it is interesting to see families with kids in all age ranges - Peter being amongst the youngest there. All the kids were amazingly well behaved, and enjoyed seeing Santa come visit.

We came home and honestly I sank in front of the Broncos game as I fed Peter. John pulled out the ladder and continued to add and switch out lights in the tree in the front yard. Around 6pm our "Why Catholic" group came over - sans Thad and Mindy whom we hope will feel better soon! It was a great way to end up the crazy busy weekend! We reflected on the Advent readings and talked about things to work on as we continue to prepare ourselves.

Now, I am feeling worn out all over and hope to sneak into bed early. The kids are bathed, Michael is already asleep and John and I are both desperately looking forward to our comfy bed!!

We hope you too had a blessed weekend!! Here's to a deep breath before next weekend when we pick up all over again.

John wears better than I do - but we are both pooped out!

Love,

catherine

Alexandra's Spy Story - Part I

2008-12-05T19:34:00.000-07:00

So I have decided that Alexandra has a talent for writing! She says she doesn't enjoy it, but she can whip fun to read stories or articles in just a matter of minutes. She had to write a short story for school - a spy adventure. Read below for part one - can't wait to read the next part myself!! Maybe Alexandra will add author to her future dreams - pediatrician, actress and author!! Enjoy - catherine

“Not again,” thought James. He was strapped to a chair and the bomb right next to him was about to go off. You may be wondering what the reason was for James being in this predicament. Well, it all started when James was in second grade. He met a new kid named Tom and they quickly became fiends. They remained cronies until eighth grade, when one day Tom avoided James and wouldn’t talk to him. James didn’t know it but Tom thought that James thought that he was better then Tom. James got better grades, had more friends and everybody liked him. James didn’t think of himself as better than anyone else, but Tom thought he did. From that day on, Tom hated James with unflagging passion. This hatred was kept in the following years. As adults, James became a top-rate FBI agent and Tom became an anonymous villain. Tom had tried many times to destroy James, but to no avail. He had even sent James plummeting to his death over a cliff, but James managed to save himself, which was a cryptic mystery to Tom. One day, Tom went on TV and proclaimed his enmity towards James. He also called for a meeting between him and James in his secret lair, which he faxed the directions for to James. James sent a proxy to the meeting, just in case, and they recorded everything Tom said. Later that night, when James heard what Tom said, he was very surprised. This was Tom’s message.

“James, I know when we were younger, we were good friends, and I know that when I left you, you were hurt and surprised, because you didn’t know why I had nullified our friendship. The reason was that you had always been better than me at everything and I thought you would rub it in my face and try to show you were superior to me. I also hated how my parents always rankled me to be more like you. Now I have finally realized you are nothing like that. So, if you will accept my offer to be friends again, I would be most grateful.”

James was utterly surprised and a little suspicious, but accepted Tom’s offer. What James didn’t know was that Tom was planning something evil.

Stay tuned to hear to conclusion in Spy Story: Part Two.

Peter - CarePage - December 4th, 2008

2008-12-04T22:26:00.000-07:00

"Daa" means Dog!!

Peter officially has increased his spoken language to TWO words! And he is proficiently signing three words. So it all started with waving and "haa" meaning HI. He does that very well now. Bye-bye gets a similar variation - so we will consider that one word signed and spoken. Yeah! Then he added milk. This he signs only. So the opening and closing of the fist - except he does it with both hands. And he loves to watch his hands as he does it. So cute! He loves playing with our dog Angel - even if she is not quite so hip about it - he does chase after her and for some reason thinks he should eat her tail - ugh! We've been working on signing dog for a while - and it has clearly come together in the last couple of weeks. He will pat his hand (on his tummy instead of his leg if not positioned right) and say "daa". Now, we are teaching him to say Angel Dog.... and sometimes he will sign dog and simultaneously say "Aaang daaa". So exciting!! The ST specialist I saw said he should be saying his first spoken word at 18 months and he now is. We are so excited. You can see Angel is not quite as excited as we are....might be because he likes to get into her water and food constantly. He will ignore the coolest toys in the world if the opportunity exists to throw her dry food and spill her water.

a) Peter - "I'm coming in on my approach - big smile - maybe she'll think I'm cute"

b) Angel - "maybe if I don't make eye contact he'll go away"

c) Peter - "mama, if you could get me in focus instead of Angel they could see me trying to sign dog!"

Another milestone that was reached today - Peter figured out how to come down some steps! Yeah!! He learned how to climb stairs in the last month or so - but coming down was scary. He would turn and sit and I was so afraid he would lean and tumble. Tonight, he actually slid down on his tummy a total of 3 steps. We need to keep working on it, but you could tell it clicked in his mind. He has become quite proficient at climbing however, and will wait for us to not watch before he will venture up. He is so fast that in that split second he will be half way up the stairs.

He is pulling to stand really well, and the kids swear they can get him to take a few steps. We shall see. Several moms in Denver on the DS chat group talked about the Radio Flyer walker being really good for our special kids to learn how to walk. I guess the weight, the bumper and the speed of the rubber wheels works really well. Yikes - those suckers are $100 at the store if you can find them. UGH! So I went checked e-bay and craigslist. I was so excited I found one at a fraction of the price.... but someone found it before me and I didn't get it. So - if on your online purchase endeavors you run across one let me know please. I have cute images of Peter pushing it down to the pool as he gets older with all his toys in it. One day!

And last, but most definitely not least, we are trying to get Peter's passport. If all goes as planned he will be coming down to Peru in January for my mother's birthday. So hoping we pull this off and he can see the ocean and play in the sand - just like I had so many dreams of him doing even before he was born. I am so excited I can barely sit still. Have so much to pull together - but will keep you posted.

God bless you all during this Advent season.

HUGS!

catherine

Peter - CarePage - November 30th, 2008

2008-11-30T23:31:00.001-07:00

HAPPY THANKSGIVING!!

We are home - and just in time as we are being hit with never ending snow. Not massive amounts of accumulation - but enough to stay in doors and avoid icy snow-packed roads. Despite our kids working to clear the drive way - it is white again. School is delayed tomorrow - so kids are excited to ease back into school after having been gone. We did get back late last night and today celebrated first Sunday of Advent. We got the tree up, pulled out our candles and started our readings. Our challenge for tomorrow is to recognized God's presence in one small thing in our day... hope you do the same!

So, Peter is not a long distance car lover! I think we barely made it to Wyoming on the way up to Rapid before he put his foot down and demanded out. I think the issue is being in the car when it's dark - but hard to tell. He has some stubborn streak in him because once he's decided he wants out that is it. Check out the picture below - Peter's driving the car! You should have seen the smile on his face. Now, we were parked with the engine off in the rest area - but still - Peter got a kick out of it! And which of us does not have a picture as a kid "driving" a car.

We did eventually make it to Rapid Tuesday night and settled right into bed for all. Wednesday the rest of the family started arriving. The cousins getting to know each other again. For all but one, this was their first time meeting Peter. I think by the fact that we got their first, Peter had a chance to be comfortable with the setting before he had to figure out all these new faces. But, in some way it had to remind him of being in the NICU... all these cute young girls uhh-ing and coo-ing at his every move. Of course he performed! The smiles, the waves, the Hi's, the coy face hiding in the neck. The kid knows what he is doing!! He was passed around and played with and hugged and kissed. For a kid that is normally on the go all day long - he sure was enjoying sitting on the couch and cuddling with his cousins!! We did go out for a bit despite the chilly weather - Peter enjoyed the ducks at the park, but was not so hip on the dinosaurs at the top of the hill (neither was I to be honest - love the dinosaurs, hate the cold!).

(Peter with Tatum, Tommy, Alexandra, Sammie & Michael @ the park with the ducks)

(Peter snuggling with Sammie during the sunset view at the dinosaur park)

Thursday was a busy day with turkey and all. The older kids went to help at the soup kitchen, while Peter stayed back and helped with the meal. As I ponder on Thanksgiving - I am first and foremost thankful for family. I feel blessed to be surrounded by people who love me! But I am most thankful for the blessing of all my kids and their health - Peter included. We came so close, yet here he is growing bigger and stronger each day. And now, when he laughs there is sound. For the longest time it was an intake of air and like watching a belly laugh in a silent movie. Now there are giggles followed by the deep intake of air, followed by more glorious sound!! And today it hit me even more.... Christmas is going to be a long time - glorious, but I suspect I will be relieved when the tree comes down. I remember last year telling Peter I was glad he couldn't reach the tree but looked forward to when he could. Well, now he can and really fast. We have placed it in a corner and positioned furniture we hope we can use to create a barrier - but I suspect my ingenious child will pulled to that tree like a magnet. But, I smile.... how truly glorious that Peter is still here and we can watch his little determined body race for that tree!!

(Peter laughing and hanging out with Uncle Bob - his Godfather)

Back to Thanksgiving.... John and I did Black Friday. We debated and had decided to stay in bed. Yet, as we heard others get ready in the wee hours of the morning I drug John out of bed and off we went. We were successful in our endeavors - so I am excited to really be able to enjoy advent knowing all is truly taken care of - if you get my drift. Later that day the older kids got to geo cache with Uncle Bob. Bless him for his patience! And bless Sharon for reminding him to bring the GPS. The kids had a great time despite the weather - and are still talking about their loot. The most popular item being the wooden gun that shoots rubber bands. Clearly I have not found an opportunity to "put it in a safe place" and Michael walks around with it firmly protected by his belt. It has caused a few episodes of drama - but fortunately no one has been hurt. Another thing to be thankful for!!

Yesterday we headed home and tried a different route. Hmmm..... won't likely try that again. I am an interstate speed plus sort of person - so fortunately John drove as I likely would have gone bananas trying to go 60mph when my soul searched for much higher speeds. Those windy country roads are just a temptation calling your name if like me you grew up dreaming of racing noisy cars at high speeds. Alas, John drove legally and safely while I buried myself in a book. Which leads me to sidebar once more....Twilight.....can't put it down! Alexandra read the book a couple of years ago and it just came out in the theatre. I wanted to read it before I saw the movie. Good and bad. Love the book!! The movie took too many artistic liberties in my opinion. So, to assess my initial reaction to the movie - we went and saw it again while in Rapid City..... a girls night out! I was more gushy about the movie second time around but honestly the book was so good there was no way the movie would ever do it justice. I am now more than half way through the third book in the series and looking forward to reading the fourth. I have to say - for us girls that enjoy that true love story with the gentleman that picks the common girl - this book is all that and so much more. The electricity between Bella and Edward is truly amazing.... love it!!!

Anyway - sorry about all my sidebars. Happy Thanksgiving..... and here is to a truly magical Advent as we prepare. Below are a few pics of the family getting the tree ready.... we take turns each year on who gets to put the angel on the top of the tree - this year was Tommy's turn. He wasn't too excited about being held up to the top of the tree, but was proud of himself after he got the angel on. Yeah Tommy!! Jack of course was Mr. Ham as he popped his head into a ton of my pictures. All in all they had fun!

Love,
catherine

ps. I think Peter wants a camera for Christmas.... check this out - he spots the camera, he reaches it successfully, then he celebrates his success!!

Peter - CarePage - November 24th, 2008

2008-11-24T18:53:00.000-07:00

Sleep Study Results

Well, good news and bad news....

Bad news first - Peter did NOT pass his sleep study. The goal was for him to be in the 90's at least 90% of the time. He didn't make this. He did drop into the 80's but according to the results was pretty much 88 or 89 and then back up into the 90's - so that was close.

Good news- Peter was in the 90's 77% of the time. This is so much more than I expected!! I honestly thought it was in the 80's at least 50% or more of the time. So I am actually pleasantly surprised. They said they could push it given he was so close, but it was not what the recommended. Since he so recently got over the pulmonary hypertension they didn't want to stress out his little system and put him back. I admit, I am actually relieved to have him on oxygen for a little longer - just get us through some of the bad winter months. I'm hoping to schedule an echo for January to ensure all is still good with being off during the day. And then another overnight study in February. Peter is starting to get a little noisy at night - so we may end up having to do a full blown sleep study to see if he's developing sleep apnea/airway obstruction.

Other news - as the kids have been proclaiming - "we got yoked". On the back of both cars we have DS awareness ribbons. Today was one of the mornings..... I've been working on "forgiveness" lately and today decided to pray for an increase in the virtues of forgiveness and patience. Well, I was tested before I even left the house. Not a good thing. Alexandra decided way too late that she had homework to print out - so you can see where this was going. We were way late getting out the door! The car was frosted up so a challenge getting out of the drive way especially since I had to drive into the glare. But, there, on the back of the van was a splattered egg very evidently aimed at our DS ribbon. Oh dear God - can I just get out of the drive way before being tested?? I didn't do so good. But then I was sad.... what was going through their mind? who? someone I see every day who snuck over at night to yoke us? Deep breathing!! Like I said - I am still working on patience and forgiveness and a long way from mastering it.

Peter had another play date today! If only my social live was as active as his!! I was so excited to meet a very nice lady named Patsy a few weeks ago. We have a lot in common - including telecommuting jobs, wanting to be good moms, and blessed with beautiful children and DS. Her house was like mini-Disneyland. Every conceivable toy in their living room and dinning room - now a large play room. I think Peter had a good time, but I had a great time!! Tommy came along and was excited to make a new friend and have tons of toys to play with.... for the first time the "I'm leaving now" didn't prompt him out the door - he was too excited about the toys. I finally had to carry him out. We are hosting a play date at our home a week from Saturday. The following weekend we have the CSDSA Christmas party. I'm excited to have Advent start - so seems like so many things to look forward to this month. Alexandra turns 14 in a couple of weeks....yikes! where does the time go??

We are headed out to South Dakota tomorrow..... as John likes to say "over the river and through the woods to Grandma's house we go...". We will be spending Thanksgiving with a large portion of John's immediate family. The kids are very anxious to see their cousins. But even more so to see Uncle Bob!! Uncle Bob has a GPS and takes them treasure hunting.... oh bless dear Bob if he forgets the GPS because the kids would likely cry the whole time we are there. Anyway... hoping for a few great day after Thanksgivings sales - although fortunately our shopping is done - so no pressure.

Hope you all have a wonderful Thanksgiving!! I know I have much to be thankful for!!

Love,

catherine

Peter's First Year Movie

2008-11-17T23:07:00.000-07:00

I sure hope this works..... color me frustrated as I tried unsuccessfully to upload my very first home made movie! I shall master technology. I still love my new computer..... but should not have stayed up late playing (again!)

Love,

catherine

Peter - CarePage - November 17th, 2008

2008-11-17T20:39:00.001-07:00

Peter Was Published!!

Hello!

So several different type of updates. First, I am working on getting our blog put back together. I am playing with the layout but the posts are there. I do have stuff on other kids there and will be putting them on more regularly now that we have a computer with some internet speed - yeah! There is also a way to subscribe so that you can get e-mail updates or other forms of notification when we update it. So please check us out at www.krausebears.blogspot.com. We look forward to seeing you out there too!!

Next - Peter was published! As many of you might know, October was Down syndrome awareness month. Parenting magazine was accepting submissions of our cute little angels. I submitted Peter at the prompting of a friend, and then went out every day looking for him. I finally gave up and forgot to keep checking. Tonight, I decided to go back out and check it out. After looking through well over 100 photos I found him. YEAH!! Peter has been published. So please do check him out. Not sure if there is a way to comment but in my biased way he was of course the cutest of all kids - but I have to admit there were some beautiful children - so he had quite some competition.http://www.parenting.com/gallery/Baby/A-Special-Joy-23-Babies-With-Down-Syndrome/9

Peter's sleep study....well, the last week was a bit crazy. We got a bit of tummy bug - very mild THANK YOU GOD!! He was looking out for us. But, we had little sleep, a lot of stress and way too busy of a schedule. Alexandra had 4 performances of The Lion, The Witch and The Wardrobe - so check out our blog to see her scary face (she was a hag). Tack on the normal school, home, work, etc and we probably should have waited. But, Peter seemed cleared up from his cold so we did it. The first night we attached him to the monitor at about mid night and watched the numbers like obsessed stock brokers. He was very restless and dropping into the 80's quite a bit. After a lot of stress and about 40 minutes we just disconnected the machine. Peter was very restless so we figured he might have a tummy ache. The next morning he just about ejected himself from the crib with quite an explosive bowl movement. That night we tried again. Every time I checked the monitor he was in the upper 80's bounce up to the 90's and then back down. The goal was that he be in the 90's 90% of the time.....I am pretty certain he was not. I was hoping he would pass so that we could go to South Dakota for Thanksgiving without oxygen. I don't think that will be the case - but a couple of tanks just for night is still a lot easier than the big machine and lots of tubes that too many people will trip over. And, honestly, there is some comfort in having oxygen through the winter months. We have much to be thankful for again this year!! Dinner will be very cold if I list out all the wonderful gifts we have been blessed with this last year.

Over the last week or so Peter has had two play groups... it is so nice to spend some time with other parents taking the same journey as us, on their own path. To talk and compare notes and get support from other families that understand how this wonderful, magical journey changes us for the better but at times can be scary and full of uncertainty. Not that we would ever change this gift for another. Check out our blog and you can see some pictures there of his play group friends.

Peter had his 18 month check up today. All was well. He got caught up on shots, and had a flu shot. So 4 in total - and he was very brave through them. Tommy was more upset watching Peter, than Peter was. Once I picked him up he smiled at the lady giving him the shots. Dr. McCaffery was happy with Peter which is always encouraging. He weighed in at 21lb 1oz with diaper - so I would speculate about 21lbs even. He has finally grown a bit at a whooping 30.25"....yeah Peter!! I think this puts him at a steady 50th percentile on the DS boys chart....but.....we are increasing chances of him being over 5 feet tall - which we all know girls like boys that are taller. Now, he is so darn cute that height might not be necessary to find little miss perfect - but, we shall see.

Mr. Peter would like his milk now - so cutting this short.

Love to all - thank you for your kind words of encouragement always.
catherine

Peter's Play Groups

2008-11-16T23:39:00.000-07:00

We are so excited, Peter has some play dates recently. About a ten days ago we hosted a group in our house led by our music therapist Cathy. We had only a couple of kids - but boy did they enjoy the music! It was nice to watch the kids play and Peter was the little energizer bunny!

This weekend we went to a different play date.... more of a mom's group for families with a child with DS. There really wasn't anything set up in Colorado Springs for mom's. So - with some back and forth of e-mails an initial group met at a local Chick-fil-A. This weekend we met at the house of Josh - 3.5 yrs old. Peter was smiley but sat in one spot. Unlike his normal self - he would just not crawl around and explore. He did enjoy going down the slide and getting music to play on a big toy. He was excited to see his friend Erick again. They are almost the same age - so it is interesting to see what they do in common and where they differ. No doubt they will grow up to be buddies!

Better get to bed.

Love,

catherine

The Lion, The Witch & The Wardrobe

2008-11-16T23:31:00.000-07:00

Alexandra auditioned for her first theatre production a few months ago. While she tried out for the witch, she got a non-speaking part in the witch's army. She was dedicated and went to every practice. She made new friends while learning fighting routines....amazing no one got seriously hurt! She was then given a second part - as a statue. But, we all recognized she had been rewarded for her dedication and hard work. Then - the break she wanted - a line was added to her! She was now a speaking role - even if one line - still a speaking role. The production was put on this week, and she did great!! She is tuckered out - especially since they did three performances on Thursday - but she wants to try out for the next production. Will keep you posted! We weren't allowed to use flash - so here are a few pictures so that she you can imagine the rest.

God bless -

Catherine

Peter - CarePage - November 5th, 2008

2008-11-05T22:11:00.000-07:00

When a door closes, He opens a window!

I realize we are a broad group of people with very diverse ideas. And I realize that today, the day after our elections finally got here you are either excited or disappointed - but soon the reality that we continue to have the same lives we did the day before yesterday sets in. I was admittedly in the 47 million disappointed voters last night. As a matter of I sat staring at the computer monitor and I cried, and cried and cried. Exhausted from being an elections judge, I finally went to bed. I honestly felt complete and utter despair. For those of you who are going to be terrible offended, please feel free to stop reading now. I promise to as much as possible keep my future blogs politics free.

Last night though I cried, I cried in complete and utter frustration, sorrow, and anger that we have elected officials into all levels of our government who do not recognize the dignity and value of every human life. My heart broke at all the lives we will loose to abortion in the upcoming years. So far it is 47 million over 35 years - and how many thousands of them were little babies like Peter? - innocent, loving and trusting. Not given an opportunity to even take their first breath. And for those of you already gasping at my conservative views - I did warn you! I can't tell how many times I hear the argument of mother's health, rape and incest. However, based on what Planned Parenthood has report that accounts for maybe 1% (that would be ONE percent) of all abortions performed annually. So - in the spirit of cooperation - let's focus on the 99% that dispose of a human life because it is imperfect or inconvenient. Or as I was told by some close to me during my pregnancy "a problem that should be taken care of" or a "burden" I had the responsibility of disposing of before it was too late. And after Peter was born, people meeting him for the first time that tell us how sorry they were for us - "what a shock" or "how disappointing". Or better yet the "you knew and you still had him?"....well, yes! YES! And I stand her today feeling like the blessed mother in the group because I got Peter and they didn't. I realize it is childish, but I feel like I undeservingly I was blessed with the best.

Today I woke up early for my morning prayers - tried really hard to be at peace and in praise. It was hard. I've been called to Psalm 37 in recent days - so I prayed it too, then sat down to journal. Wanting this heavy weight off my heart. I wanted to trust and believe and see the light that shines beyond that dark clouds. I told God how hard it was for me today. I read a few e-mails from friends about being positive, and keeping our eye on Him. "If only it were that easy" I thought. I'm an amateur at this and I still despair!!

I reflected on the actual elections. Mr. Obama ran a remarkable campaign that has redefined how politicians run. Mr. McCain ran a more traditional campaign. And, while I am generally a traditionalist, I am hooked on gadgets, small appliances and pretty much anything cool with power. And, that is that campaign that Mr. Obama ran. Really, it was like seeing a new technology rolled out on your computer....for some of us aging folks - the first time we saw a "Windows" computer after spending years learning how to enter commands at the prompt sign and thinking Pong was the coolest game ever. And I sat back saying, I must learn something from this - that to really engage people, drive change, and get people moving - we must honestly change the same old way we've always done things. We need to learn and revolutionize - we must think outside of the box and be creative in how we reach people with the voice. Guess what - as I thought this felt a ray of hope breaking through the dark clouds.

I get it God! I need to learn, but I must not give up. I must not feel defeated - I must continue down the path of truth to protect every human life. This isn't about religion - it is about humanity, respect, dignity. Mind you this all happened by about 6:45 when I had to get the kids up. I prayed that God continue to give me opportunities to share and educate on the blessing of our children - and especially those that will be less protected than before, those we called disabled but who in so many ways are more able than us. And then the sign - as I read through my e-mails I found the one I had not expected to see. Yesterday while working the elections I received an e-mail welcoming me to the Colorado Springs Down Syndrome Association board. I had interviewed last month and felt I did not do well. But, they were excited at the ideas I had and I officially join the board in January. WOW! WOW-WOW! WOW-WOW-WOW!! An opportunity to truly be a part of an organization dedicated to protecting the rights of our special children and educating our communities and our medical providers so that prospective and new parents will not have to be afraid at the news none of us expects to hear.

So I learned today that yes, when it seems a door has closed, God will provide the open window for us to keep going.

God bless you all -
catherine

Peter - CarePage - October 31st, 2008

2008-10-31T22:05:00.000-06:00

Happy Halloween (Almost All Saints Day!)

What a beautiful day in Colorado! I can't remember the last time we had a balmy trick-or-treating evening. Normally we are bundled up to the tee and have chili waiting for us. Today was bootiful (ha ha)!! The sky was blue and the air warm. John took the older 4 kids trick-or-treating down in the Broadmoor area of town. Rumor had it that the folks there handed out king size candy.....for those non locals these are the biggest and most expensive houses around. Well, the rumor was true and the kids came home with bags and bags and bags of king size candy. Alexandra was practicing her upcoming role in The Lion, The Witch and The Wardrobe - a hag in the army. With a green and black face - and all dressed in black - she was scary. The we had little Darth Vadar and big Darth Vadar. Michael has been wanting to dress up alike with John for years - and this year they did it.....Darth and mini-Darth with the heavy breathing and all. Jack decided to be the Ninja he picked out last year and scrapped at last minute - fortunately the costume was plenty big and he enjoyed it! Tommy recycled Jack's favorite costume of all time - a bumble bee coat that even has a stinger! And then there was Peter - in the most recycled of Halloween costumes - a Winnie the Pooh that started with Michael. WOW - 10 years later and the pooh voice recorded into the costume still works!!

I have added a few pictures of Peter in the photo gallery - so please check them out.....Peter tubeless!! YEAH!! Peter and I didn't go out into the dark - we stayed home lighting candles (don't have to worry about oxygen explosion anymore!), baking lasagna and making up hot apple cider. We handed out candy to the kids that came over. All in all we had a wonderful relaxing evening. And we reflected on this time last year....it was more than just the weather that was different. Peter is a whole different child. This time last year Peter was working on holding his head up, he was still learning to eat orally, had a feeding tube and oxygen. He was small. Now he is a strapping hyper active little dude. He wants to move and play. He may not be walking, but that doesn't stop him from getting around and getting into trouble. Nothing is safe with little fingers!! And I wonder about next year.....what will Peter be doing next year??

And just a quick update - got a call on my cell from Dr. Abman. They are submitting the paper work for the overnight oxygen test at home. We should get that next week sometime I think. Then do it right away and send it back. I am convinced it will be great. In which case we can take Peter off of oxygen at night. It seems so petty - but it makes the trip to Grandma's for Thanksgiving SOOOOO much easier. No lugging the huge concentrator, extra tanks, lots of tubes, tape and cannulas up to South Dakota and back. I can't tell you how freeing it is to be able to just pick Peter up and go. I feel so carefree!! And it is so much easier to run an errand and just take Peter with me. I LOVE THE FREEDOM!!!

Will keep you all posted on Peter's progress. This week he has started to take off on eating with a spoon on his own (sort of) which is great. I have to make sure the spoon makes it into the jar by positioning the jar just right....we have food all over the place....but Peter is so proud of himself. Sometimes he still wants to be pampered and fed, but it is exciting to see he is really understanding the concept of self feeding.

On a completely different note - one of the kids stepped on my purse which had my eye glasses in it. I was wearing my prescription shades at the time. I was so upset. I knew their days were numbered as they are on child #4 ripping them off my face and twisting them in the split second before I recover them. Anyway, I had to drive this afternoon. I put some contacts in.....oh goodness - my eyes feel horrible and I can barely see right now. So please do excuse any typos - i feel almost legally blinded by these little plastic things. I think I need to get some new glasses.....maybe I'll get myself some Sarah Palin glasses - I hear they are selling like hot cakes!

Have a spooktacular evening!
catherine

Peter - CarePage - October 28th, 2008

2008-10-28T21:57:00.000-06:00

Pulmonary Hypertension.... Resolved!

The words we were waiting to hear - "Pulmonary Hypertension - Resolved"

Peter had his appointment with Dr. Duster today. I had a client meeting in Denver which I ended up having to walk out of so that I could race down and meet John at the doctor's office. They took us back, and we did Peter's usual strip tease for the pretty echo technician. She turned on the Baby Einstein video. Maybe, just maybe, this time Peter would be interested in watching it. Nope.... not really interested. Instead he tugged at my earrings, tried grabbing the cord of the probe and generally tried wiggling right off the table. I whispered in his ears, but could barely hear my words because my heart was pounding so loudly in my chest. I keep glancing over at the screen reading numbers hoping I could guess which was the pulmonary pressure - there were numbers all over the board which only shortened my breath and quickened my heart.

Finally, I swallowed and took a deep breath. In an attempt at a cheery voice I said "So, what are Peter's pressures at today?". "She's used to me asking" I thought, surely this will be no different than any other time - and I just need her to tell me which of all the numbers I saw was THE number. "Well" she said, "I'm not sure what numbers you are used to so I'd rather Dr. Duster discuss these with you". My heart stopped. i stared at her - was there a smile? Did I miss an encouraging tone in her answer? "Why can't you tell me this time??" I wanted to yell! They've had no problems telling me before - why not this time?? I looked over at John. He was entertaining Thomas. I honest felt the world swirl around me..... my head was screaming "JUST GIVE ME THE NUMBER!"

We headed back to another room for another nice technician to come in and check Peter's saturation rates, vitals, etc. I stared at the machine - I was willing the numbers to be spectacular. A 95 keep showing up.... "how can that be? at home he's 96 to 98!" At that point my obsession with a single percentage was intense. She seemed happy with the 95. Well, ok, but really - I just want Dr. Duster with the gosh darn pulmonary pressure!!

Finally he arrived. He was clearly jet lagged from him trip to Vietnam. His eyes weary, but his smile big - I hoped this was a good sign. We struggled back and forth trying to share information. Finally I was going to get the pulmonary pressures.... "twenty four to twenty seven" he said. Oh no! that was up from last time....should I panic or should I not? Gulp. "So?" I uttered. He looked at me at me and said "which is normal for us here in Colorado Springs, and in this case normal is good because there is nothing better than normal". The world stopped swirling, my heart didn't seem so loud, but I know Peter wanted me to not grip him so tightly.

Then we discussed next steps..... and much to our surprise Dr. Duster was advocating just getting rid of the oxygen because keeping Peter on tubes was going to impact his development. We talked about keeping Peter on at night, or taking him off. We decided to contact The Children's Hospital again and talk to Dr. Abman. Give him the results of this echo and schedule an overnight oxygen saturation test off of oxygen. If that comes back normal, then off of oxygen we go 24/7!! A follow up echo in 6-8 weeks after we pull the oxygen to get our final seal of approval.

Dr. Duster always records into his little machine before he leaves the room - dictating his notes and occasionally asking us a question as he speaks into the recorder. I always wonder about the person who listens to it. Then again, I've been told it is a software that interprets and generates a document. I like to think it is a little person sitting at a keyboard carefully listening to each word. Someone on the other end of the recorded message who now knows Peter and cares about what this message would say. The same routine as usual as he recorded the message - Peter's age, weight, sats, pressures, etc. Then something nice about the parents. I joke that him saying "Mom asks sophisticated questions but we are now on the same page" is key code for "Mom is a pain in the rear and asks too many questions'. But, he recorded his nice message about our family and then does his final section. He reads off each of Peter's medical diagnosis and the status. I know this piece - ventricular septal defect - residual blah blah blah as down the list he goes. Then he gets to Pulmonary Hypertension and he says "pulmonary hypertension" silence, silence, silence followed by "Resolved". Oh thank you dear God for this miracle!! After 17 months and 18 days we finally heard the words we've waited to hear..... pulmonary hypertension - resolved!! I have played those three words around in my mind for the last 9 hours! I thanked Dr. Duster about thirty six times - and I just wanted to say - "You Dr. Duster are the instrument God used to give me this miracle!". I did my normal greeting at the desk, waived at the lady in the back that used to work with me at PacifiCare, and I walked out. The floor felt light, the sun bright and I cried. I held Peter in my arms - whispered what a good boy he was and I cried tears of joy, tears of thanksgiving, and tears of praise. Thank you God for my little healthy boy!!

Pulmonary Hypertension - RESOLVED!!!

Peter - CarePage - October 20th, 2008

2008-10-20T21:55:00.000-06:00

Sarah is back!!

For those of you following the Carepages for a while - you will remember that when Peter first came home, his physical therapist was Sarah Gaw. About a year ago Sarah, her husband Matt and their little boy Campbell moved to the Ukraine. Sarah & Matt work with an organization called Global Action based out of Colorado Springs. This organization provides non-denominational Christian support in countries all around the world. We had an opportunity to see them last weekend which was wonderful! They shared with us their experiences in the Ukraine - a very far cry from the life here in the US. They work in an area called Crimea and shared with pictures of the kids they have worked with there. Living at a camp called Hope Center, they have spent almost a year ministering and caring for very poor and orphaned children. It is clear that these children desperately need help! In addition to their daily work with children, they offer four summer camps where for 10 days these children can escape their daily struggles. For these short 10 days they have clean accommodations, they are kept safe, fed and clothed. It is a dedicated team of staff members and volunteers that give these children hope, and exemplify the love of Christ. If you would like more information on this remarkable ministry, or would like to consider joining or supporting Sarah and Matt you can reach them any one of these ways: mgaw@global-act.org www.global-act.org or www.coloradogaws.blogspot.com. These really are two remarkable young people that will make the difference in the lives of children that so desperately need it. Please keep them in your prayers as they journey back to Ukraine in the new year to do what many of us dream, but only few of us actually do - sacrifice our lives to serve others!

I did attach some new pictures of Peter with Sarah and Matt. You'll also see a pic of Peter with a early morning mohawk. I do promise to take some newer pictures of Peter tube-less and get them posted. John and I took the plunge and finally got a new computer. We switched teams and went with a Mac computer. So far I LOVE it!! I am still learning so bare with me as I master my new technology and get back on track with updates and pictures. I'm having a bit of a hard time getting things copied over to the blog - so that is outdated at this time - but I am sure I'll figure it out.

Speaking of tubeless Peter....I must confess....I felt like the worse mom ever. Peter was in the family room playing - I was trying to do too much all at the same time. I ran upstairs, downstair, outside, inside and in circles....then a panic attack kicked in. I could hear Peter but I could not find Peter! I called his name and he squawked back. For the first time in 17 months he didn't have a tube I could follow up find him. He had worked himself around the back of the couch and was just having a ball playing hide-n-seek!! No fair!! I'm thinking little mobile-leave-no-trail Peter needs to have a GPS put on him because he is loving to hide from me. After John and I set up the new computer late Friday, Peter hid under the desk. And he was playing peek-a-boo....at least this time he was popping his head out and laugh when I said "where's Peter".....it was so cute seeing his little platinum blonde head pop in and out and in and out from under the desk.

Now, confession time...again. I really need you guys to keep praying for Peter. I guess without the echo at the end of the month and the blessing from Dr. Duster I am still nervous that this is all too good to be true. Afraid that somehow for some reason this blessing will be taken away and Peter will have to go back on oxygen. I am so elated that he is free! (during the day at least) - but this little bit of me is still fearful and uncertain. He looks great, acts great, is having fun - so I feel bad for doubting this miracle. I am probably making no sense at all! So, since it is very late and I am very tired - I am just asking you to continue to pray for Peter and for us. It is so great to have Peter off oxygen during the day - I just don't want to screw it up and have to constrain him again.

Oh, oh, oh.....and on a different note - Peter, oh master of the yogurt bites, is having a great time self feeding and is awful close to wanting to do the spoon.....we are getting their slowly but surely!

Ok - need to go snuggle a very tired Peter.

Love,
catherine

Peter - CarePage - October 15th, 2008

2008-10-15T21:54:00.000-06:00

Cardiology says...... GO FOR IT!

Just a quick update from my elated update last night - even more elated this morning. Talked to Dr. Duster's back up and he said this was great news. He told us to go for it! He didn't burst my bubble - he let my bubble fly free!! Talk about one blessing after another....wow.....who knew we could get so much in such a short period - almost overwhelming. He wants to do an echo on Peter at the end of the month - so we head in on the 27th for an afternoon echo with Dr. Duster. We are so excited!!

On another Peter note - he started feeding himself finger foods! It is as if he has all this reserved talent he's been waiting to let shine at the right time. He loves his little dehydrated yogurt bits - and has figured out how to pick them up and put them in his mouth. He also got a molar this week. So now he has two little teeth on the front bottom, three big teeth on the top front, and a molar in the back.

Thank you again for sharing in these miracles with us!
God is so good to us!!!
catherine

Peter - CarePage - October 14th, 2008

2008-10-14T21:53:00.000-06:00

YA-HOOOOO!!

I am so hyped up right now I could go stand outside and scream from the top of my lungs - but chances are the neighbors would think something horrible happened. Instead - Peter had a PHENOMENAL visit!! I am so incredible excited. His oxygen saturation was good on and off oxygen, so Dr. Abman wants us to take Peter off oxygen during the day and put him only on it at night - see the next echo in January and consider pulling it all of then if the numbers are still good. I am so excited I can't barely put my thoughts in words. Now, I am trying to calm myself down as I want to make sure the cardiology side is cool with this.....called Dr Duster and he had just left today for Vietnam and will be gone for 2 weeks. His partner is in tomorrow - so will check Peter's sats in Colorado Springs and then report them tomorrow.

So here is how it all went down - we got to the hospital and I asked for the paper work to go get Peter's chest x-ray. They came back and said the doctor didn't want one any more....hmmmm.....I thought either very good or very bad but was optimistically leaning to good. We went back and had Peter measured and weighed and vitals taken. He was fully clothed so this ups it a bit but he was around 21.5lbs dressed and still a stocky 29.5 inches long. His vitals were good. Then they took his sats and the numbers were low - I told the nurse I knew they were wrong!

We then headed into the exam room for the visit. Dr. Abman came in with a respiratory therapist who wanted to do his sats again. They hooked him and voila great numbers that matched what we get at home. They decided to take Peter off the oxygen and see how he responded - his sats dropped as expected, but then surprisingly in less than a minute bounced right back up to where they had been when on oxygen. They just stood there watching the monitor and grinning at Peter. They asked about Peter's echo and when I shared the results they were besides themselves! They said they just didn't expect such an improvement in Peter in such a short period of time - and that this was indicative to how resilient his lungs are and how fast they are healing. Confirmed without a shadow of a doubt that his pulmonary hypertension was/is reactive and that he has healed rapidly with his current treatment.

Then we talked about the overnight oxygen saturation test we did about a week or so ago. Dr. Abman talked about how most kids with DS have trouble at night because the low muscle tone is worse when they are relaxed and sleeping. However, Peter is sleeping soundly, maintaining solid saturations and showing (at this time) no indication of airway obstruction, etc. He actually said the sats were so high, it showed Peter was probably getting too much oxygen. WOW. I explained that Peter is a tummy sleeper and he said that was probably helping Peter and improving his breathing at night. He said until we see him develop issues with night time there is no need to do an extensive sleep study.

Finally, he said that we could either lower Peter's oxygen or take him off it at day and back on at night - the second being his preference. Then he leaned down and looked at Peter and said "you're doing great Peter" to which Peter responded by smiling and clapping! He said he wants to see Peter's next echo results but figures unless things change we can just talk on the phone and don't even have to take him back up. Even better! Now, if numbers drop we will have to put him back on - but no reason to expect that unless he gets a cold or something.

Tommy had come up to TCH with me, so we headed out happily and loaded up in the car. About 5 minutes into the trip Tommy screams out "Peter pulled his tubes off"....and for the first time I could say "It's ok Tommy, he doesn't need them now"....I think Peter was making a point as he dramatically ripped them off his face and started laughing!

So many, many, many prayers of thanksgiving are due today - and of course a few prayers that cardiology won't burst this bubble tomorrow. Will let you know.

Yeah! Yeah!! YEAH!!!! I held Peter and was almost in tears being able to just hold him and kiss his cheeks - I can now sit and kiss his cheeks!! - something I've only been able to do when we are changing out his tubes. I've waiting for 17 months to do this - and what a great feeling!!

Thank you again for all your support!! Will try and post pictures in the next day or so.

Love,
catherine

Peter - CarePage - October 13th, 2008

2008-10-13T21:08:00.000-06:00

Peter's Hi's and Lows!

Hope you caught it! Peter's HI's and BYE's for that matter. Little man has become quite the expert at greeting people and waving goodbye...and for the most part gets so excited he waves very energetically with both arms. Often his little face will turn read as he strains out the word HI. Actually, he says HI for both coming and going people, but it sounds and awful lot like "hhhaaaaa". He is so proud of himself - and so he should be. And everytime you tell him "good job Peter" with any degree of excitement in your voice he will stop what he is doing, but a big happy smile on his face and then clap for a few minutes. He is so cute!!

And the LOW's....well....Mr. Peter is working really hard on pulling up to standing. One morning John and I were struggling to wake up, we tossed and turned and could hear Peter doing his morning exercise. At about the same time he seemed awful clear to both of us - we jumped up and then was Peter half standing and half over the edge of the crib. It gave us quite a fright! We shared it with Liz, our neighbor who comes over to babysit the kids when John had golf tournaments, so she put the crib mattress down another level to avoid him jumping out after his nap. John reported that today, when he went to wake Peter up - Peter was pulled right up into standing in the crib - way to go Peter!!

Now for everything in between -

Feeding: well, Peter was doing great and eating lots of textures. This weekend he went on strike and decided to blow out as much as you put in his mouth unless it is his toddler puffs or dehydrated yogurt bits. Did I mention a whole package of those has less calories than a jar of dinner? Well, today it was as if we were playing a dinner game - I would give him a couple of puffs and then sneak in a spoonful of dinner. Then he would figure it out and try spitting out right after swallowing. We did this until I saw him eyeing the peas on my plate....well, we started off with one, and then kept going. I believe he ate darn near a cup of peas for dinner. He may just be telling us he is done with baby food and ready for table food - we shall report! I suspect teething is contributing. We have been stuck at 5 teeth for a while so surely there is a companion waiting to pop through.
Crawling: still getting up and rocking on all 4's but not yet figured out the whole process. Plus army crawling, trying to stand and rolling/climbing over anything and everything is more fun.
Bath time: Peter graduated out of the seat we had - well, John graduated him because he was tired of putting the seat in and taking it out all the time. I guess I was babying Peter with it as it appears he just didn't need the seat at all. He is doing great on his own - and of course loves it if the other boys are in with him.

Last thing, Peter has his Pulmonologist appointment at The Children's Hospital (TCH) Tuesday 10/14. We will be seeing Dr. Abmen whom we have not seen but our friend Pam talked very highly of....so I plan on posting more tomorrow and letting you know how it goes. We are prayerful and hopeful that we will see even more progress and be just another step closer to getting rid of oxygen. Please lots of happy prayers and vibes for Peter.

Love to all - thank you for your support!
catherine

Peter - Carepage - September 28th, 2008

2008-09-28T21:59:00.001-06:00

A day at the lake!

Well, I just wanted to post an update to tell you how great Peter is doing. What finally got me off my behind to do it was that we went to the lake today and Peter had a great time. It all started with my creative husband. He tends to just find or end up with things for free....amongst them an abandoned kayak at our old town house complex. Well, he tested it for sea-worthiness in our swimming pool - and today we took it out on the lake. We tied it to the top of the van and slowly headed up into the mountains hopeful it would not fly off the top of the van. We enjoyed lunch at the resevoir, tried out luck at fishing, and took turns in the kayak. It was so nice to be outdoors. In all our wisdom (or lack there of) we left home without sunscreen. Well, we are all a bit pink in the face....including Peter who has tan lines on his face where is oxygen tube was taped. I am going to update our blog after this so that I can post more pictures - the leaves are turning in the mountains and some of the aspens literally looked like they were on fire! Here are some pictures from the trip - I only wish they would capture the colors as we saw them....

But back to Peter - can I just tell you how proud I am of my little man??!! He just brings me so much joy. I was just telling a friend that he is the child I never knew I wanted, but the one God knew I needed. His joy, perserverance, and huge heart inspire me! He is so loved, and in turn loves us all so much with his hugs, kisses and big smiles.

I am on a distribution list for the local Down syndrome association, and this week there were a lot of e-mails back and forth about feeding challenges. There are parents with kids in the 3yr to 5yr age range that are still struggling with feedings and only eat select puree food. And while I think I am the mom with the youngest child on this group, I was so proud to share how well Peter is doing. And I did one of those look back in time things again....a year ago I was in tears when Peter would refuse to eat. I was afraid we would need to get a g-tube. I just wanted to close my eyes and jump into the future when all those issues would go away. And guess what? I am there. Yes, Peter is not eating steak and potatoes but probably would if you gave him a chance. He is doing so awesome! He is loving textured foods, will about rip anything out of your hand, and seems very interested in what others are eating. He is gumming food well, and using his tongue to shift food around his mouth. He even had part of a tortilla chip the other night while we were grilling. Today he had a few chunks of chicken meat. His favorite is now the toddler dehydrated yogurt bits they sell at the store.....did you catch that? TODDLER!! Peter is eating TODDLER food and taking huge strides every day! We still have a way to get him to self feed - but he has even tried a few times to grab food and bring it to his mouth. We have a way to go - but slowly but surely that too will be a thing of the past.

Mr. Hyper-active Peter Bear is into EVERYTHING....and has been for a while. He has completely mastered moving from sitting to laying and back without the need of any support. He is getting up on all 4's and rocking back and forth a ton!! He also crawled over to the couch last night and successfully - with no help needed - pulled up into the standing position three or four times. Oh my goodness - I was so excited! I hope it doesn't feel like I give you the same updates time after time....and I realize it takes a while to hit each milestone - but because we see Peter work so hard to reach them that we must rejoice! When I take the time to just watch Peter do his stuff and work on what he is learning in therapy I just want to shout from the mountain tops how I was blessed with the most amazing child! I love all my children - but Peter has touched each of us so much more than we ever knew he could.....WE LOVE YOU PETER!!

Ok....speaking of little man - he needs some cuddling....ok, Mama needs some Peter cuddles.

Good night - love to all,

Catherine

Peter - Carepage - September 8th, 2008

2008-09-08T21:59:00.000-06:00

IT IS A MIRACLE!!!

Ever reached one of those times where you really needed a sign? Well, John and I had both been feeling restless - the need for some clarity. It started Sunday with Alexandra and Michael having to Altar Serve the 7:30am Mass. Rather than wake all the little ones after a late night with my parents - we left them home with Granny and Grandaddy (aka Grandpapito). John and I honestly can't remember the last time we got to really enjoy Mass as a couple not worrying about kids going wild in the pews. The readings were poignant and the homily inspiring - we had a gee-wiz moment. In the evening we prayed the Rosary - and during one of the readings it talked about praying to Mary to intercede for us on our wordly needs. Well, I prayed about evey Hail Mary asking for Peter's healing.

Today we had Peter's cardiologist appointment and a miracle was delivered! For the very first time in Peter's short life his pulmonary pressures were NORMAL.....yes - NORMAL!! The nice echo technician was keeping a poker face, but she knows by now that I ask questions. Half way through the echo-cardiagram I asked her what Peter's pressures were and she said 22. I could not believe my ears....I said "you've got to be kidding me!"....to which she responded "No...I was so surprised myself I've measured them 4 times to make sure they were right!". It took every ounce of self control to not fall to the floor in tears - tears of joy! I could barely contain myself as I choked up and a few tears ran down my cheek. Truly - once again - when we mosted needed it God provided a miracle of healing for our little angel on earth. It seems every miracle Peter has received over his life has been after a true heart felt prayer to our Mother asking for her intercession.

(Peter during his echo)

(Peter during his EKG)

WE ARE SO PROUD OF YOU PETER!!

After the echo we headed over to the other side of the office to see Dr. Duster. He came in and first words out of his mouth where "what have you done?" He was thrilled but honestly just as surprised at how healthy Peter is compared to prior visits. Just to put it in perspective - before Peter's heart surgery his pulmonary pressures were in the upper 90's on a good day, and over 100 and something on a bad day. After the surgery he dropped into the 80's and a few weeks later he was mid 40's to 50. And he stayed there and stayed there and stayed there. Given the altitude we live in, they accept 35 as the upper most end of "normal" but healthy normal is in the 20's. And that is where we were even with Peter being off of oxygen for an hour or more. His saturations were a little lower than hoped but at 93% much better than what we've encountered before.

So next steps - after lots of prayers of thanksgiving! - we lowered Peter from 1/2 liter to 1/4 liter of oxygen. We are to measure his sats at home and may be able to bring him down to 1/8 liter. We are scheduling an appointment to get him up to The Children's Hospital in Denver to see the pulmonologist again. He needs to get Peter's lungs x-rayed and possible adjust the treatment plan from that perspective. Our goal is to get Peter's sats to be 96-98%. We go back and see Dr. Duster (cardiology) in January. If at that time Peter's holding good sats and his pulmonary pressures are still normal (on room air) we will be able to take Peter off oxygen during the day - and leave him on it at night. Then give him some time to adjust to that. Once that is stable, we will likely move him completely off of oxygen...so honestly a sensible step down program! He said with other kids they can do that progress in weeks, but with Peter we want to take our time to ensure the success. WOW! There are not enough words to express how in awe and relieved and happy and proud and everything else I am today!!

My parents were with me during this visit. They met Dr. Duster about this time last year. During that visit I cried the whole way home - desperate and frustrated because the news wasn't getting better and the prognosis seemed so dismal. And today, we drove home and once again I had tears - but tears of joy at the gift of this miracle. Our Peter Bear - our little angel and walking testament to the love of God!!

Please - offer up a little prayer of thanksgiving for us - Lord knows we've showered him with requests for healing - we should swamp Him with prayers of thanksgiving!!

Love to all!
catherine

Peter enjoying time with Grandpapito & Granny!

Road Trip to Rapid City

2008-09-02T22:34:00.000-06:00

PETER'S FIRST ROAD TRIP!

Peter officially ventured out of the state of Colorado 'over the hills and across the river to grandmother's house'! Despite a crazy week that had me in New Hampshire Monday through Thursday, and Denver on business Friday - we loaded up and headed to South Dakota to see John's parents. Peter traveled in luxury having graduated up to a big boy car seat finally! We left late and arrived in the wee hours....2:30am on Saturday to be exact - John and I were the walking dead at that time!

It was all go all weekend....thank goodness for Starbucks! Saturday we took the kids to "Story Book Island" in Rapid City. This is a park with statues and small attractions based on different story books - from Thomas the Train, to Winnie the Pooh, Pinochio and so many others. It was HOT that day. Peter pooped out at the park (I think from the long ride they night before) and slept through it all. Alexandra and Michael remembered the park from prior visits - so they ran Jack and Tommy around to the different attractions. I myself have been there once before - Thanksgiving in sleet.....so the 100+ degree weather was a welcome change. Tommy and Jack were extremely excited to wrap up our stroll by getting cowboy hats. Sidebar for a second - Jack and Tommy's treat every weekend is to go to our local King Soopers stores to ride the penny horse ride. John insists I have lost my savings with the price of gas - but often the cooperation I get on a Saturday morning is rewarded with whipped cream from Starbucks and a few rides on the penny horse ride. Tommy likes the big horse at one store, and Jack the smaller double horse ride at another....so there is some drama there! However, the two boys and I had been on the look out for cowboy hats they could wear to ride the penny horse - and now we have them! And just in case you are wondering about the picture with Winnie the Pooh below - yes, that is Tommy; yes, he likes primary colors; yes, he dresses himself! And in the whole trip this was the one day he survived without wearing his favorite red M&M t-shirt...although he did insist on putting it back on after bath time!

Then we headed off to Canyon Lake Park - close to the golf course where John learned to golf. We enjoyed lunch outdoors and Peter perked up great. He was starving and ate like a champ in the outdoors. We then headed over to the creek/river so that John and Michael could go fishing. Tommy and Jack played around. Alexandra's highlight of the trip was sliding down the spill way. Michael was petrified and after a minor melt down at the top of the spill way eventually took the plunge. Not sure he will do it again, but Alexandra will not doubt be taking her kids down one day. Peter enjoyed crawling around and climbing on us all. And - for the first time - completely on his own moved from the laying down position to the sitting position WOW!! Of course I went wild taking a million pictures - wish I could post all of them here!

We wrapped up the day with Mass at Grandma's church. The kids were worn out, but there are so many wonderful people who have been praying for Peter - that it was great to show him off! It really is amazing when we think not only of the power of prayer - but of how wide spread the web of prayers for Peter have been - I would say spanning the globe including good old South Dakota! Talking of spanning...well, spinning....here are some shots of the little boys mastering the skill of hoola-hooping.....and long lost skill among today's younger generation if you ask me!

Sunday was our hiking/national park day. How many of you have seen the "National Treasure 2" movie? Well - we recreated the movie. In the morning we headed out to Sylvan lake somewhat behind Mt Rushmore. That is the scene in the movie where they open the entrance into the temple of gold, etc. Anyway....after doing much research - which really just involved watching those scenes a hundred times over - our kids were thrilled to see John had figured out the appropriate location of the filming. And - amazingly enough they climbed the same rock formations and after much searching found the hole in which Nicholas Cage stuck his hand. Amazing!! The views were spectacular and we got lots of walking around the lake in. Peter rode in the backpack and really was a trooper enjoying the fresh air.

After fishing, hiking and taking the paddle boats out (thanks Grandpa!) we headed over to Mt Rushmore. Tommy was the most excited and keep wanting to get closer to the "big heads in the mountain". He talked to them and of course waved big good byes when we left. He is still talking about the "heads"! We also went through the exhibits they have there....and Alexandra in true tradition of the ladies on my side of the family could have spent the whole day in the gift shop picking things up, putting them down, trying them on, walking around and somewhere hoping someone would hand her a lot of money to buy all the items she fancied! The younger boys spent time dancing on the colored blocks in the cement floor. However, the highlight was the exhibit where you can blow rock up....so in the museum area they have an old fashion detonator - you push down on the handle and a video screen shows rock blowing up. The boys remembered it from last time and I think they could have spent all afternoon blowing up virtual rock! We wrapped up the day with a homemade spaghetti dinner joined by John's niece Shannon and her boyfriend. It is hard to believe Shannon is now in college as she was younger than Jack when she came to John and mine's wedding in Florida so many eons ago!

John got up early Monday with his dad to golf. Of course it rained! But they persisted and got all 18 holes in! Grandma and I took the kids to play in a swimming pool/water park type theme park at a local hotel - it cost an arm and a leg! Peter slept, Tommy rode the lazy river once and then wanted nothing to do with the water, Jack made lots of friends hanging out in the hot tub (really not sure what that spells out for his future - oh Lord have mercy on the girls he fancies one day!). Alexandra explored the most and loved getting soaked. Michael got every penny worth of that experience by climbing the stairs and shooting down the slides for almost three straight hours!

We then headed back home....and finally got home around 10:30pm. We were exhausted. We took the scenic ride home and actually saw incredible amount of wild life. The kids most enjoyed the huge herds of buffalo.....of course we were not quite so amused when the buffalo decided to nap in the middle of the road - hmmm....how close do you really want to be to a sleeping buffalo who wakes up grumpy. John really didn't think our insurance company would buy it if our minivan lost a battle to the buffalo! Thank goodness all ended well!!

(and for the record - no - I didn't get out of the car to take the picture of us passing the sleeping buffalo on the road - that is the car in front of us.....just in case you doubted my sanity after what is clearly an long period of sleep deprivation and a lot of fresh air!)

Back to Mr. Peter given that this was his first trip out of town other than Denver. Rapid City is a lower altitude than Colorado Springs by several thousands of feet and we really believe it made a difference. Peter's coloring was better, his appetite and feeding was better and his energy was through the roof - honestly you would have thought we had him on a caffeine drip. At 11pm we were shutting off the lights and rocking him till he finally would go to sleep. Now, unfortunately I forgot our pulsox probes at home and we didn't want to risk going to the hospital and being lumped with an unpaid out-of-network claim.....yes even us people in the insurance business worry about our claims not being paid! I probably should have lowered Peter's oxygen level as we got lower, but without any readings we left him at his same O2 levels. I think we may have given him too much which would explain the hyperactivity. Since he got home he is back on a more normal sleeping schedule. We have our next cardiologist appointment next week so I will give him our annecdotal experience and let you know what he says. I honestly have mixed feelings. John and I had somewhat decided to try our hardest to stay in Colorado assuming that we could get Peter stable here by the time he turned two - but the change was quite significant. Now, we really weren't there long enough to get a true reading on his improvements - but it does confirm in my mind that a lower altitude may be required. Other Peter highlights - Peter did push into the sitting position on two other occassions - and then today pulled himself up to standing at the couch (after the cushions were removed). And, as if that weren't already enough for this weekend - Peter's 4th tooth came in....so now we have two on the top and two on the bottom!! YEAH PETER!!!!!

OK. I have to go to Denver tomorrow....so better get to bed! I hope you enjoy our pictures....if I have time I will put them all in a slide show and add them to the blog some other time. And one more request - please pray for my parents' safe travels. God has kept them safe despite the hurricanes in Florida where they have been visiting. They were headed back to Peru at the end of this week - but surprised us today by letting us know they are coming up to Colorado! We are just besides ourselves with excitement at their visit. They get here on Friday and will stay just over a week. I have a feeling they won't recognize the kids as they have grown so much over the last year!

God bless you all!

catherine

Peter - Carepage - August 23rd, 2008

2008-08-23T22:52:00.000-06:00

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