Monday, February 25, 2008

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

Wednesday, February 20, 2008

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 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 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

Saturday, February 2, 2008

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 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 "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!" 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