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

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