Family Update 4/15/12

Peter is doing well....and no news is good news on the spinal. He did get quite a bump in the amount of chemo he has to get and the first few nights were rough - waking up, dry heaving some, but generally just uncomfortable. Fortunately it has got better and we've got through a couple of nights were he will stay in his bed. John is being the strong one! When Peter wakes up he will give him a drink in his bed and get him to lay back down. So far so good.....we were just talking today that maybe we can think about moving him out of our room some time in the near future. Would be so nice to have an adult bedroom again! We'll think about it again after school is out.

What is most exciting is that little man seems to be really taking off with working on vocalizations! I will swear he hugged me and said "I love you" as he squeezed tight. No prompting in the world has got him to say it again.....but I know he did say it!! He has been using "I do" and "I did" this week, in addition to sounds that are clearly efforts to put one or more words together. Yes, I am still in that overwhelmed state but pushed to start The Listening Program with Peter. I decided to go with the least intense to start off with - 15 minutes a day. We made it (by stretching our imaginations) to 8 minutes on day 1. Then none on day 2 and loud NO!! on day 3. So we decided to not worry about time and logs and stress - and let him just listen as much as he wants until he gets used to the headphones which are huge!! And it seems to be working. We have stayed on the first module that is classical music with nature sounds overlaid. He calls out when he hears the birds, and just listening to the music he starts to make sounds - singing, talking, humming - all good! This is complimented by Peter's imaginary phone conversations that he really enjoys.....he opens up our "I don't have a real place to be stored" drawer in the kitchen, takes out John's old phone and walks around conversing up a storm. When he is done, he closes the phone up and puts it away. Today at church he was really enjoying the music and can clearly sing "alleluia". We enjoyed a breakfast at church and it warmed my heart to see Peter playing with the other kids - chasing, waving, dancing and more chasing!

Gretchen continues to be his best buddy. So often I get asked if they are twins, and in so many ways they feel like it. She is however the constantly on the move, multi-tasking, high energy yet nurturing little girl. I took a great picture of her in the car this weekend - while Peter plays with John's old phone, G plays with my old Blackberry. She talks and texts all at the same time! So sitting looking so cute in the car - her baby in her lap she was the picture of a multi-tasking little mommy on the go! She accumulates things too.....those valuables she can't go with out..... right now it involves whatever electronic is tickling her fancy at the moment, her baby that looks like it has been well loved for 100 years, and the Cars book we got at Costco a few weeks ago but looks like it has been read by 100 kids. Of course, anything Peter has or wants becomes at the top of her most-wanted list! The two of them had a great time yesterday. We spent hours running around Mr Biggs. It is a fun center here in town that is closing down - but it has a portion that is for little kids - it is like a village with a garage shop, a bakery, farm, fire station, and so much more. They weaved in and out of each nook and cranny having a great time! While Peter is a man on the go, fortunately I can coax Gretchen into following me when we need to take off after Peter......it beat the times they have decided to run off in opposite directions and not respond. Then the decision becomes - who can you catch faster and then do a 180 and chase after the other before they get hurt. Thank you God for letting G get to the point where she follows at least some instructions and has embraced her role of chasing after Peter too!

Mr Biggs was a lot of fun - it was actually the event I organized for Michael's class this weekend. The boys were in and out of the laser tag most of the time, plus arcade games, go carts and just hanging out. It is very rewarding to see Michael having a good time with a group of boys that he has been able to build a good relationship with at school - and see it continue to blossom out of school. Many of these boys started off at the school with Michael, and take great pride in knowing they will be the first class to graduate who completed all their years at the school.....a badge of honor they all enjoy! They are goofy, and funny and make me wonder when they say things like "you didn't hear that did you Mrs Krause?" For the record, I did not stalk the boys or run after them.....I was more strategically positioned to just make sure no one went missing. Why you ask? well, i didn't want to embarrass Michael (or Mike as he insists on with his friends) - I was exhausted from sitting in the bleachers for Jack's wrestling tournament.

Oh goodness it was a long week. There was an "incident" at practice on Tuesday that got horribly blown out of proportion and then mis-represented to the school principal. Jack was kicked off the team which crushed his spirit. After various conversations, interviews, etc Jack was put back on the team. He vowed to win gold this year - and that is exactly what he did! It wasn't easy as he had two strong opponents. He almost pinned one several times, and the other took Jack to overtime. But at the end, his hard work and perseverance paid off and he got the gold medal. We are very proud of him!

My proudest moment came however off the mat. During the tournament there was a young boy, about Jack's age, from another school who suffered a crushing defeat in his final match. The boy sobbed in the ancillary gym where the medals were being handed out. What made this boy stand out was that in addition to sobbing in a way that broke your heart, his face had deep purple birth marks that covered a good half of his face. I could easily see how many were slightly uncomfortable and did not know what to do. Thinking he was hurt, I asked him if he was ok. His dad turned and smiled, and the boy just nodded he was not hurt. Jack could tell the tears came from a painful defeat and a gold medal desperately desired but horribly lost. He stood next to the boy rubbing and patting his back as he tried to comfort his ego. At that moment in time I know Jack didn't see the deformity in the kids face, but just a fellow soul who needed to be acknowledged and comforted. I was proud of him! I share the story because so often we have to address Jack's passion misdirected, but this was on of Jack's glorious moments where his passion is directed towards compassion. So proud of you Jack!!

Also very proud of Alexandra - the budding golfer in the family. She and John have been training hard. She is frustrated she has not yet broken 100 but continues to hold on to the goal. She shot 111 again at the varsity tournament this week. The JV was cancelled due to weather - but she said for the time she played she was doing even better. More to come this week! In addition, this week is her induction to The National Honor Society. Alexandra was selected to be an "Ambassador" of her school and is excited to be participating in various events coming up. She was also selected for "Campus Ministry" which she was the most excited about. She had applied for that position months ago so when the results were finally published it was that celebration but also relief of the wait being over. Still getting driving hours in.....and I can't wait till she can go to the store to pick up milk and a Starbucks without needing an adult in the car! :)....."baby - get me a venti 'bucks please!" .....oh I can't wait!!

Last but not least by any means is Tommy. He is living the dream! Loving school and loving having kids to play with in the neighborhood. We have two kids around his age that moved in next door and he plays with them pretty much every day - generally it is hours in the backyard. There is still his best gal buddy several houses up who loves to walk Angel (our dog) with him. I, of course, love it that I get e-mailed or stopped by the moms and grandmas to tell me just how sweet he is, and how glad they are to have him as a friend for their kids. Warms my heart! Now that spring is here he will be starting tennis and I know he will be very excited!

The week has been crazy busy! In all my free time (I took Friday off work to make it happen), I was co-organizer for an appreciation dinner for the Colorado Springs Down Syndrome Association. It was stressful leading up to the event but it went off without a hitch! We had about 50 volunteers and sponsors at the event. The theme was "Welcome to Holland" based on the poem about parenting a child with special needs. The room was filled with tulips and had a spring like feel to it which felt warm and cozy as the evening progressed and the room was lit by candle light and little white lights that framed the windows with amazing views of the mountains changing colors as the sun went down. I love our downtown area!! So I am going to end this post by sharing with you this beautiful poem that I know has touched so many lives. We all have our own journeys, our own path to walk down, but as a parents of a child with special needs I think there is a thread that binds us together - we know that while others may pity us, our little secret is that we are blessed beyond our wildest dreams! until you've experienced that unconditional love, it is hard to explain why this journey we never knew we wanted is not only awesome, but we wish for others to share in it too. We are so blessed!!

WELCOME TO HOLLAND by Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Love -
Catherine

Family Update!

Things I learned this week...........I am often overwhelmed - and need to get used to it - don't remember what it feels like to be peaceful; I suck at ironing - as told by the vein-like lines climbing my pant legs no matter how hard I tried to get them out; the weekends are never long enough - I could use 3 day weekends every week; just because I am tired doesn't mean the kids are ready to go to sleep - making the house black and staying really quiet doesn't always work; and my favorite is that I am clumsy enough to hurt myself with the seat tray on an airplane.....I was trying to sleep on the plane but unable to get comfortable, decided to lean my elbows on the tray and cradle my head. The warning slides should have alerted me to the danger ahead - I did fall asleep until my arms slipped off the tray and my head came down with a crash broken only hitting the chair in front of me before landing on the tray.

Back from another trip and exhausted! I really could have used a long weekend to get caught up. A decent amount of laundry done and the pantry is stocked so I really should be thankful for what is done vs. what seems to be the eternally growing list of to-do's. I read this week that women need to relax at least 15 minutes a day - quietly - to ensure our body stays in balance. Some chemical I don't remember .....clearly not one that is in balance right now. I guess 15 minutes is something to strive for.....and I could really use it as I sit contorted trying to update this blog and Gretchen is literally screaming in my ear thrilled at the previously unattained pitches. My ears are ringing!

So starting with the little one first - G is doing great despite having a runny nose from allergies. She is energetic 24/7 and talking up a storm. This weekend was exciting as she finally relinquished her old worn out tennis shoes to try on some new shoes. Shoe shopping makes her scream in a non-happy way, but she found her dream shoes - hot pink party shoes! Once she found her dream shoes suggestion of trying on any other shoes brought on the non-happy screaming. Hot pink party shoes it is!! She and Tommy are becoming very close and she can be heard calling out "Thomas!" constantly. Her doll has gained a few more stains and scars ....did I mention she is not machine washable?! So not smart thinking Santa!! At Jack's last wrestling match Gretchen had been eyeing the girls playing with Barbie like dolls. After walking past several times, circling the group and finally getting the courage to try and play with the "big girls", Gretchen proudly held out her doll only to receive an unenthusiastic "she is dirty!". Clearly disappointed she came back to the bleachers to sit with me while hugging her doll extra tight. So this weekend we did our best to give "Dolly" a scrubbing and bought her some clothes to help her look more presentable. So the stains from being well loved are hidden but not lost. Gretchen likes to give her baby positive words of affirmation with at times a scary level of enthusiasm - tonight it sounds like "AH-GRRRR UUUUUHHHHH YOUUUUUU SSOOOOOOO PRETTY AHHHHH-GRRRRRR!!!!!".

Peter is doing great! Still no glasses ....they probably did go out in the trash one night. The replacements are still on their way - delayed by billing issues. No more two words together - but still working on words. Planning on starting his programs this week.....assuming I get a few minutes to read the instructions and get them ready. Having them on my nightstand must count for something - right??!!. My excitement this week as little as it may seem is that Peter is doing a much better job at bending down while bending both knees. Locking one leg as been an issue for a long time. He works on it but seeing him do it more and more often outside of therapy is very exciting. He is still not sleeping well, and is not eating well - but has got so thick on the upper body - big top resting upon his little chicken legs! He is really enjoying the warmer weather and playing outside. We still need to sign him up for swim lessons. In early April we have his transition meeting with the elementary school to prepare for Kindergarten. I am excited to report that this year's school pictures turned out really cute!

Thomas is still loving school - second only to playing with his friend Arianna up the road. He is devastated when she is not available to play.....I think given a choice he would move in with them so they could play all the time! When she is not available he keeps up with Gretchen and Peter. He and G are having more and more fun together, and he will help her with "Dolly" - he makes a great uncle! Ferdinand continues to be his favorite book, followed by anything Dr. Seuss related. I find that hilarious as I admit his books gave me the creeps as a kid - the Hat in the Cat totally stresses me out - I do not find messing a house up to be entertaining! He is still working on guitar although not as focused as we would hope; and continues to count down to summer break and tennis lessons - you're not alone buddy! I can't wait till summer either!!

Jack is super busy with wrestling and football. He is still devouring books like crazy. Thank you for the prayers for Jack - things have been getting better at school and spring break was a much needed break for him. We ask that you continue to keep him (well, all of us!) in your prayers. First wresting match he lost, second one he won beautifully, and third one I thought would leave him injured. For as hot tempered as Jack can be he keeps his cool on the mat and a focus that is inspiring. The kid he was wrestling was the one that pinned him during the finals last year and is clearly very talented. Even though he lost by points, he came off the mat with a smile on his face. The other team's coach told Jack that he had broken his opponents 2 year streak of pinning every one he wrestled. The boys mom then came over to congratulate Jack and share the same story. Suffice to say Jack is still beaming from it! The mom was so sweet to come over - her older son was on Michael's basketball team - and we had talked a few times. Her kind words were the cherry on top for Jack. May we all remember to take a few minutes to lift others up! How awesome to experience defeat and still have something to celebrate.....his determination, fight and never-give-up attitude will serve him well!

Michael decided to quit football. It was emotional as he knew how much John wanted him to do it. But, as the new kid on a very experienced team it was an unsurmountable task. Michael has always preferred basketball as a sport - and will be doing baseball again this summer. He is enjoying school and his friends - so thankful for that! No mocking allowed - but Michael had his first babysitting gig this weekend for our neighbors. From dog sitting to baby sitting! Our neighbors see how well Michael does with his siblings and were thrilled that he was available to take care of their son for a few hours so they could get away for a late movie. The kid slept so Michael enjoyed catching up on a book and some History channel. Phew - we all wanted the first time to go smoothly! With as busy as our family has been with sports, I am so thankful for all the help Michael gives me. So proud of what a fine young lad he is growing into!

Alexandra made the newspaper! She and John were referenced for the upcoming girls golf season. They have been at it hard, and I get very positive feedback on how she is doing. The goal is to consistently shoot under 100 and then work down from there. She really enjoys the sport and I am thankful she and John have that something special they enjoy together. She continues to do well at school and supports John's finance class at church by watching the kids for the families going through it. She is still doing to odd jobs around town - baby sitting, house help and office help - but is hoping for something more stable for the summer. John took her to a job fair and now has a few options to continue to explore. We are also hoping she can get some volunteer time in at the hospital so she can continue to discern her college options - so far still leaning for something in the medical field but leaning towards occupational therapy. Alexandra really enjoyed the down time of spring break including a sleep over and two movies this weekend (October Baby - loved it! and The Hunger Games - good but you can never capture all that is in the book); now time to get ready for testing and college searches - ahhh!

I think that catches us up on all! John is busy with golf and finance and taxes coming up! I am busy with work and home and too much other stuff. Hoping we can find some time to just slow down and enjoy but right now feels like we are going non-stop at neck breaking speeds. Off to fold some more laundry!

Hugs!
catherine

Thankful.....

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!

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!

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?

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

Another Family Update

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.

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)

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!!

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?

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