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

Where did May go?

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!!

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!!

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!

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!!