Wednesday, August 22, 2007

Peter - Carepage - August 22nd, 2007

Just a quick update to let you know Peter continues to do great! Monday is our appointment with the Cardiologist - so extra prayers for a successful echo would be great. We are very hopeful that we can start weaning the oxygen. Peter spends so much time pulling the canula out of his nose that I am not sure how much oxygen he actually is getting. He's doing great with his therapy - and while delayed compared to other kids his age, has come such a long way in the last month. We are still working on head control knowing that once he gets that a lot of the other things he is trying to do will come easier. Feedings are getting better - but we still have quite a way to go. We are encouraged that he is improving, so at his own pace he is headed in the right direction. Peter will no doubt teach us over and over and over again that he will do things - at his own pace! He has started sucking his thumb recently - and of course likes to pull the canula or NG tube out of his nose in the process! We still have to work him to get smiles - but they are so rewarding when we get them. I must have been working extra hard today for smiles because not only did I get a bunch of them - but I got the first couple of laughs too!! Just a reminder that our Buddy Walk is this Saturday - we would love to have more friends join us in the walk. If you have any questions on it please do not hesitate to give us a call at home (719-593-9503). There is a registration fee of $12 for adults, $3 for children. This fee covers a continental breakfast, T-shirt for all registered walkers, lunch and a chance to win some great prizes. The weather looks like it will be great - so hope we see you there. And if you can join us - don't forget we are team "BABY BEAR"!! Thank you to all who are supporting us in this effort. Next week I'll let you all know how the walk went and the results of the echo. Please keep praying for our little man so that he can continue to be blessed with all the miracles he His pace! God and Peter are definitely working together to remind me patience!! Hugs to all! catherine

Friday, August 10, 2007

Peter - Carepage - August 10th, 2007

COLORADO SPRINGS BUDDY WALK: On Saturday, August 25, the Krause Family will be walking in the Colorado Springs Down Syndrome Assn Buddy Walk to show our support for Peter and the more than 350,000 individuals with Down syndrome in the United States. I 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 I take, every dollar I raise, will help ensure that each individual with Down syndrome in the United States 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. I am asking you to - physically or virtually :-) - Buddy Walk with me to make a difference for Peter and all people with Down syndrome in our community. I know some of you are way too far away, but for those close by, I hope to see you at Buddy Walk 2007! Follow This Link to visit my personal web page and help me in my efforts to support Colorado Springs Down Syndrome Association through learning about DS, sponsoring our team, or joining our walking team! ****************************************************************************** Some email systems do not support the use of links and therefore this link may not appear to work. If so, copy and paste the following into your browser: ******************************************************************************
PETER UPDATE: Peter continues to grow, and yesterday he turned 3 months!! It is amazing to think of all he has gone through! He broke the 11lb mark this week making 11lb 3oz on Tuesday. He is becoming more conversational each day - and we love hearing all he has to say! All the Krause kids are chatty - but I think Peter might just have us all beat! Peter is still struggling with his feedings, but we are seeing some improvements...yeah Peter. The Speech Pathologist is coming on Thursday at 7:20am (way early!) to further evaluate Peter, help us with his feedings, and get him prepared for solids. We are very excited to have her help! HUGS to all! catherine

Monday, August 6, 2007

Peter - Carepage - August 6th, 2007

Just a quick update on Mr. Peter Bear....what an amazing little boy! He had his first week being at home with John while I was at work. They bonded over physical therapy exercises and feeding times! Peter weighed in at 10lb 12.5oz on Tuesday - a whooping 8oz gain over the prior week. We are sure he will break 11lb before our next appointment tomorrow. Peter is now up to 4.5oz of milk every 4 hours and not yet keeping up with it. While it is great to see him grow, I am still a bit stressed about his feeding skills. He will consume about 50% of his milk orally, and the rest we have to put through the pump. We are trying to get a feeding/speech therapist in on a weekly basis to help Peter. We had a lady come out and do an evaluation. She gave us some exercises and massages to help strengthen his facial/jaw muscles. From what we are told, she is the best of the best - but as a result she is very booked up. We are hoping to hear from her this week and have her help getting Peter through this and ready for solids in a couple of months. Peter continues to work very hard at his physical development. I am so inspired watching my little man. He will prevail on pure perseverance! His head is getting stronger and stronger. He is doing much better on his tummy, and at times will scoot his legs under his tummy working towards a crawling position. He's working on his upper body strength, and is doing great at getting his head midline and keeping it there. Still not so good on tracking toys - but hey - why track toys when there is a whole world out there to explore. Believe it or not, he is teething already. As a result he is bringing his hands to his mouth and munching on his fists. Until Peter I didn't realize what an accomplishment this unlike my other kids who still hear "keep your dirty fingers out of your mouth", Peter hears "Way to go big guy!". Alexandra filed a grievance with the fact that Peter can put his dirty fingers in his mouth and the rest of them can't! :-) If she gives up on her dream to be a doctor - she will no doubt make a great lawyer!! Please continue to pray for Peter's health. We are fighting a cold around the house, so praying for Peter to not get the brunt of it. And, as usual, for his continued recovery and feeding skills. HUGS! catherine