Peter - Carepage - March 31st, 2008

Sorry it has been a while - March hit hard and furious and I am so glad April starts tomorrow! Fortunately Peter (knock on wood) stayed healthy - but the rest of us have been beat up! John and I officially got the flu, Alexandra-Michael-Tommy officially got Strep, we had colds, tummy stuff and everything else hit us all at the same time. Add on the stress and I have not been a pretty sight! My father gave us quite a scare a couple of weeks ago with emergency surgery, a stay in the ICU but fortunately seems headed down the road of recovery. Only now are we finding out exactly how close we came to loosing him and we are so thankful he is strong and able to pull through it. Through all the challenges of March - Peter came through it healthy and with one tooth! He finally got his first tooth!! We think his gums must be sore because almost over night he decided to stop drinking....and if there is one thing that I don't handle very well when it comes to Peter - it is him not eating well. So, yes, I'm stressed out about that too. He's done this before and then bounced back so for now we are just watching him closely....being the anal parents that we are Peter's every feed is logged in a notebook so we know exactly how much he ate. So please - a few extra prayers for Peter to stay healthy, get through the teething and eat well. Peter's next echo is at the end of April....so we are anxious to see how that goes. He gave John and his therapist Kerry a fright a few weeks ago. They tried checking his O2 levels and couldn't get a reading out of the 70's. However, we took several readings after that - all in the 90's - so we are hoping it was just the probe on the machine that wasn't getting a good read. Peter is still on oxygen and continues to treat his tubes as his best friend - playing with them constantly. Of course that also means tearing it off his face so his cheeks can get quite sore at times. Peter continues to get stronger and stronger. He is a total wiggle worm now and won't stay still for a second! Even when you are holding him he twists around to make sure he isn't missing anything. He loves playing with the kids - especially Michael who can make him really laugh. Michael will give him a kiss and Peter throws himself back in a fit of laughter and then leans in for another kiss, then throws himself back....and they can do this for ever. If Michael tries to walk away Peter will twist until he sees Michael and will wave and squeal until Michael comes running back to give him another kiss and we start all over again. Maybe Peter also got my OCD nature? The exciting news for us is that Patricia Winders - a pioneer in physical therapy for kids with Downs is now up at Children's in Denver. She is on every video I've watched, and written every PT book I've read, and quoted in about every other DS book I have. Well, she is now local and will be doing an assessment on Peter this upcoming Friday. Being the dork that I am of course I am taking my book so that she can sign it! Exciting is that Peter's physical therapist in Colorado Springs - Kerry - is coming up with me so we can both hear what Patricia has to say as she assesses Peter. I am so looking forward to meeting her!! Peter is finally having his sedated hearing test this week and we need to schedule his eye exam. His eye muscles are weak - so I assume we will need to do patches or something with time. They take turns - so that is funny - one day one eye will tend to roll into the middle and the next day the other eye will. I thought I was struggling with my left and right until I finally realized he really does alternate eyes! He is big and cute and active and unfortunately unphotographed at this moment. He didn't strike a decent pose for recent pictures - so I need to try again and will post them to the carepage as soon as I can. Better run - take care - and please extra prayers for healing and health for the Krause house & my parents. Hugs! cath

Peter - Carepage - February 25th, 2008

Super quick update on Peter.....guess what he did this weekend??!! All on his own he got up on all fours then rocked back and forth! He'll be crawling soon - how exciting! We know soon is a relative term - and in Peter's world it passes on his clock - but it is so exciting to see him headed in that direction. You can see he is getting excited too. He's also been doing great at sitting on his own and seems to be getting stronger by the second. I'll try and get a picture of him doing it next time. You know - I enjoyed watching all my kids develop and hit milestones, but Peter has a way of doing it just at the right time so that we can truly be awed by it. HUGS! catherine

Peter - Carepage - February 20th, 2008

Quick Peter update! Like I mentioned last time, Peter kicked the cold pretty fast. However, our cardiologist's partner asked that we keep Peter at a 1/2 liter of oxygen. We go back for the next echo at the end of April. We continue to pray for a miracle for Peter's lungs. Peter is getting chunky! On January 15th Peter went in for a synagis shot and was right around 15lbs. He went back in on February 12th for his next shot and was 16lbs 5oz....so over a pound in less than a month!! We are so excited. I think if I had to put a feeding tube in now it would be like doing it for the first time all over again except without Kodi (Peter's nurse) telling me to push through it as I freaked out. I am so glad those days are behind us!! The enteral feeding company is coming to pick the pump and other pieces of equipment up this week - yeah! On the less good side, Peter's eating is catching up with him....poor kid - can't cut a break sometimes. I guess his digestive system is slow, and because his appetite has increased he developed acid reflux. Not that we would have known it because his disposition is so pleasant that he would just puke on us, smile and keep wanting to eat. We talked to our pediatrician earlier this week and he has put Peter on two meds - one to accelarate his digestion and one to control the acid reflux. Peter really dislikes these meds so we will need to see how long this goes for....I assume he will outgrow this. Now we have less coming out the top and more coming out the bottom - literally! Ending on a good note...my child speaketh! During his PT session on Friday there was a lot of activity in the room. I heard "mama mama mama" and didn't think anything of it until Kerry said "did you hear that?" It wasn't until she had me slow down enough to focus that I heard it coming from Peter. He had such focus in his little eyes - his lips pursed together and he was saying "mama mama mama". I could have cried. That night he went to town! We are so used to hearing some variation of "aaaaa" that hearing him was like music to our ears - he lala'ed, mama'ed and baba'ed into the wee hours before wearing himself out. Of course all weekend he just smiled as I excitedly said and signed "mama" trying to encourage him. I think Monday morning he figured he better reward me for my persistence. He was laying on the bed early - he likes to sing in the mornings - and before I headed out to take the kids to school I looked down on him and told him we needed to get some good pictures for the carepage so that we could give you all an update - he smiled and said "mama". Oh my - did my heart ever dance in the moment in time! Now he's letting me work really hard for my next "mama"....a mother's job is never done! But, the tight little lips, the look of concentration on his face and the crystal clear syllabals coming from him mouth will be etched in my heart for ever! Much love to you all - stay warm and healthy - this really has been a cold winter with lots of flu going around. Why can't we here in Colorado be on the "warming" side of global warming??! HUGS! catherine

Peter - Carepage - February 2nd, 2008

Sorry this wasn't earlier in the week - I have been very busy at work and therefore working late. I hope I remember everything I wanted to share with you! First, Dr. McCaffery did call me Monday night - I just love that man! He said the "acute bronchiolitis" is actually RSV. He didn't believe Peter had RSV especially since he got his synagis shot about 10 days earlier. Phew! He still agreed he wanted to see Peter the next day to check him out. As you all know I was not doing to so well on Monday....by midnight I had determined the Children's Hospital in Houston TX was the best place for Peter to be treated, was planning house projects to get it ready to sell, was researching Houston housing, etc. Yep - it's that really small piece of OCD in me. Well...bear with me as I share a story here. Our dear friend Patty had once told me about a dream where her husband Doug had a scar on the side of his head, a tear on his face, but God was reassuring her all was ok. Many years later Doug got a brain tumor. Upon praying about the situation, God led her to the journal where she had written about this dream so many years earlier, and she knew Doug would be ok. Well, God knows I'm not doing a real good job at listening, but a great job at talking! Well, my friend Silvia had told me about a lady's blog site she visits. Amongst other things she has a son with DS. I sent her an e-mail in December and forgot all about it. Monday I got an e-mail from her where she mentioned how blessed we are to have our sons - so I decided to visit her blog again. There in a letter to parents of special needs kids, she quoted me! I'd never felt quote worthy before - but she put the following statement that I had put in my e-mail to her (you can find the complete letter at http://www.mommylife.net/archives/2008/01/to_moms_and_dad.html). "And I just read an email from Catherine, a mother of 5, whose youngest son has Down syndrome. She wrote: While I always knew in my heart of hearts that I would be a better person because of Peter I could never dream just how deep that learning would be. So as I stare at Peter in my arms I realize how much I have learned and how much I have to go. I am inspired by him to be a saint - but fall short every day. It gives me an excuse to whisper in his ear that he needs to beat the little battles going on in his body because I will need a life time of him so that I can become the mom I dream of being!" WOW...it so was what I needed to hear after a crazy day. THANK YOU GOD!! Enough of me and back to Peter. Tuesday Dr. McCaffery determined his drainage in his throat caused a bacterial infection. He is on antibiotices to help with that. His saturation rates where in the 90's thanks to the increase in oxygen. Peter has continued to eat well all week, and is definitely a lot better. He weighed in at 15lb 15oz - so a 5oz gain in less than a week! He is sleeping well, and his congestion has diminished. YEAH! Peter is racing down the road of recovery!! Peter never slowed down and the new pictures posted will show all he is working on in therapy. He is getting closer to sitting on his own - he can stay propped for a bit. With some support he rocks back and forth on all fours. He loves to stand, so we are teaching him to stand propped on furniture. We are also doing hand-on-hand feedings so that he can learn to feed himself. Yesterday we went through the PT book we have and Peter is well into stage 3 of development so we are so excited! Running short on space, but I just want to ask for continued prayers for Peter and the doctors treating him. Looking back on this week I have figured out one more thing I need to learn from Peter - to trust! When you are with Peter he radiates such purity and faith - he is enjoying his journey. I need to strengthen my faith and trust because I am sure God is tired of me trying to jump in the driver's seat! Thank you to all for your messages, e-mails and phone calls of support. HUGS! catherine

Peter - Carepage - January 28th, 2008

I woke up with a sinking feeling today, sort of sick to my tummy from nerves and quite anxious about the echo. I wish I could say my fears were unfounded, but they weren't....maybe a mother's instinct? Sorry if this is repetitive to all you who checked in with me today. But here is the synopsis. Peter got a cold on Friday which apparently is now "acute bronchiolitis" (not sure how that is different from bronchitis....still need to look it up). As a result, his lungs are "damaged". This caused his saturations to drop to the 80's, which in turn caused his pulmonary pressures to shoot up so over all the echo didn't look good. (His pressures should be under 30 and they were around 70) He is still breathing ok, but Dr Duster (our cardiologist) said if it deteriorates he could end in the hospital on a ventilator. Dr Duster says "the junk" is going around and is lasting 4-6 weeks....I am soooo hoping that is not the case! I'm hoping our beloved pediatrician Dr McCaffery will call me back - but either way we will see him tomorrow. When I gave the nurse the run down she almost had me going in for an x-ray - but decided to have us see Dr. McCaffery tomorrow first. Dr Duster also said given where Peter is now, he will have pulmonary hypertension for the rest of his life. He is optimistic it will remain reactive and not fixed which is the fatal form. He wants to get Peter to the point that he can live in Colorado Springs without oxygen during the day - but probably on it at night for ever. However, if he doesn't improve by July/Sept will have to put him on medications. The med is actually the active ingredient in viagra - so that should make diaper changing interesting! We may also get to the point of having to move to sea level so that Peter can have quality of life. So with that said - I need a nice glass of wine and a good cry! Then I can pick up my pieces and keep putting one foot in front of the other.....I have so much to be thankful for that I need to remember that even when I feel discouraged. Will keep you posted on Mr. Peter Bear over the next several days/weeks. Thank you for all your continued prayers! God knows when is the right time and way to answer our prayers - just once in a while I wish it was exactly like I asked!! Hugs! catherine

Peter - Carepage - January 26th, 2008

Feast or famine on our carepage! Peter seems to have come down with a cold and is quite congested. His PT therapist cut his session short yesterday because she was concerned with his breathing. Of course too late to try and get into the doctor. We are taking it minute by minute. Of course Peter has his echo on Monday and I doubt this will help the numbers. Please continue to pray for Peter's health!! Peter had a rough night last night and was up a lot - which really meant bouncing between John and I as we took turns cradling him and trying to get some sleep. We were both exhausted and had planned to skip the 3am feeding for the first time - just so that we could get some consecutive hours of sleep. Peter had different plans! He is a little pale today, but as usual in good spirits and playful. He isn't coughing a lot, but when he does you can hear the congestion. It is hard to tell how much is in his throat vs his chest or lungs. Anyway....in a very sleepy state - just asking for more prayers for Mr. Peter. Will let you know Monday how the echo goes if not sooner if anything develops with Peter. Love to all! catherine