Monday, August 24, 2009

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

Saturday, August 8, 2009

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

Monday, August 3, 2009

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!