Sorry, sorry, sorry - I can't believe how much time has gone by since the last update. Every weekend I keep saying "I need to update the carepage" and then Monday would arrive and another crazy week managing schedules, work and the house! It is amazing how time flies!! I am going to start off with the not-good but not-bad news. Peter had his follow up echocardiogram yesterday. The purpose being solely to check his pulmonary hypertension. While the results are what I expected, I was still disappointed. Peter's pulmonary pressures continue to be elevated and worsen when he is off of oxygen. We would like his pressures to be in the 20's - with 30 being the upper end of OK. Based on his prior echo we know he's in the mid 30's on oxygen but off of oxygen his O2 saturation drops from around 96% to 89% and his pressures jump to 46 within an hour. This is significantly better than before surgery, but no better or worse than what they were 2 weeks after surgery. I keep praying for a miracle. As I mentioned in the past, the hypertension scares me more than anything else Peter has gone through. In the back of my mind knowing that any day could be the day it becomes "fixed" and fatal. I pray to God that Peter heal and one day this too will become a distant memory as his heart surgery already is to me! Dr. Duster acknowledges that the risk is there for it to become "fixed" but remains optimistic that Peter is going to recover....he's just taking the slow road. He continues to believe Peter will continue his current oxygen needs till he is 12 to 24 months, and after that hopefully move to oxygen just at night and eventually nothing. Only time will tell.... On to some other news - Peter is AMAZING!! I hear it already - "Tell me more!!". I am sure you all think I repeat myself till I am blue in the face, but the fact is every day I believe this more and more even though I think that is not possible. Peter truly is amazing! He is grace under fire. Peter has the most pleasant and loving disposition of any child I have met. When he smiles, I melt. And when he just stares at me, I want him to see the best me I could ever be...if I could become a saint I would do it for him! His affection, his tenderness and his innocent vulnerability make me want to hold him tight and never let go! But, if I don't let go he can't accomplish what his little determined self wants to accomplish. It is amazing to see him get stronger and stronger every day. To see him learn from his different therapies and apply himself to them. His persistence is paying off! It seems like just yesterday that I worried he'd never keep his head midline. Now he does that easily, he brings his hands together in what looks like a prayer of thanksgiving. He smiles, and coos, and laughs. He answers you in babbles when you talk to him. He has <....drumroll....> figured out how to roll over from his back to his tummy and almost back. He is working on his arm strength to push himself up. His favorite game is having you hold his hands so that he can tighten and curl his body up to get into the sitting position. His reward being to chew on your finger till it is bruised (thank God there are no teeth yet!). And when he is tired he will curl is body back up and keep his head perfectly as he leans back down into a laying postion. He could spend hours going up and down from the floor to the sitting position. He has just this last week started bearing more weight on his legs. Where before he needed to be leaning against your body to push up and down, now if you hold him under his arms he is starting to bear weight and enjoy it. He loves it if you "eskimo" kiss him or let him try to kiss you back. We are soooo thrilled with how he has progressed with his physical therapy and were really bummed to have his therapist Sarah move away. She's done such a great job with him!
So Peter takes after John with his love of music. Give him a 'maraca' and some good music and he is in heaven! His eyes light up like the midnight sky over new years and you can see his little mind racing. No doubt one day he will be working his charms on the dance floor! His great music therapist Cathy has done wonders with him and is working on choices and sign language. Peter will actually look at flash cards and choose which song he wants next - he will sometimes pick the card on the right and sometimes the card on the left - after some serious checking them out. He appears to be signing "mother"....and while it may just be a failed attempt to get his thumb in his mouth - I chose to believe that I was his first signed word!! :-) Another highlight this month is having my parents here to visit. My mother was able to come after my brother's wedding in Spain (all together - CONGRATS ROGER & MONTSE!!). She has helped juggling the family schedule, kids activities and keep us regular with laundry. She has driven kids here, there and everywhere and done so with a smile. My father was able to recently come up from Peru which in itself is an answer to many prayers. After a very long and difficult recovery from surgery earlier this year, he was given the clear to travel recently. He's taken over driving the kids to school in the morning and steps in on a moments notice to play a game, find a child missing in action or just hold Peter so that I can take a shower! I just wish they didn't have to go home soon!! So here we are, almost halloween and so many of Peter's challenges seem so far away. And while the hypertension is still scary, I think I have found a balance that keeps me going. While I enjoy every moment with Peter as if it where the last, we sometimes just sit together where we can dream of the future. I won't ignore the risks, but I refuse to have them take away my dreams. Without dreams of tomorrow I would be depriving Peter of hope. So, between sleepless nights, long days, challenges at work and piles of laundry - I still dream of taking him to the pool next summer, his first steps, watching him run after Jack and Tommy, watching him grow and reach so many firsts still to come. And even better than the first will be the seconds and the thirds that will follow as he persists in mastering what challenges are to come his way. And yes, one day I think my Peter will be an Olympian. My loving husband thinks I've lost my mind, but on my to-do list is researching the sports and the special Olympics so that Peter and I can start talking about what he wants to do. I remember watching a show about the Special Olympics on TV back in 1995 when Alexandra was Peter's age. I remember watching it and having a feeling deep down inside that one day I would be there like those parents on TV. Now I feel closer to that odd feeling so many years ago....so with that said, it is late (I am sure I am almost out of space) and it is time to go dream of the amazing future waiting for our family - each of our children in their uniqueness and wonderfulness with which God made them - each special, and loved and such a part of the blessed life I've been gifted. Good night everyone!! Love, catherine
So Peter takes after John with his love of music. Give him a 'maraca' and some good music and he is in heaven! His eyes light up like the midnight sky over new years and you can see his little mind racing. No doubt one day he will be working his charms on the dance floor! His great music therapist Cathy has done wonders with him and is working on choices and sign language. Peter will actually look at flash cards and choose which song he wants next - he will sometimes pick the card on the right and sometimes the card on the left - after some serious checking them out. He appears to be signing "mother"....and while it may just be a failed attempt to get his thumb in his mouth - I chose to believe that I was his first signed word!! :-) Another highlight this month is having my parents here to visit. My mother was able to come after my brother's wedding in Spain (all together - CONGRATS ROGER & MONTSE!!). She has helped juggling the family schedule, kids activities and keep us regular with laundry. She has driven kids here, there and everywhere and done so with a smile. My father was able to recently come up from Peru which in itself is an answer to many prayers. After a very long and difficult recovery from surgery earlier this year, he was given the clear to travel recently. He's taken over driving the kids to school in the morning and steps in on a moments notice to play a game, find a child missing in action or just hold Peter so that I can take a shower! I just wish they didn't have to go home soon!! So here we are, almost halloween and so many of Peter's challenges seem so far away. And while the hypertension is still scary, I think I have found a balance that keeps me going. While I enjoy every moment with Peter as if it where the last, we sometimes just sit together where we can dream of the future. I won't ignore the risks, but I refuse to have them take away my dreams. Without dreams of tomorrow I would be depriving Peter of hope. So, between sleepless nights, long days, challenges at work and piles of laundry - I still dream of taking him to the pool next summer, his first steps, watching him run after Jack and Tommy, watching him grow and reach so many firsts still to come. And even better than the first will be the seconds and the thirds that will follow as he persists in mastering what challenges are to come his way. And yes, one day I think my Peter will be an Olympian. My loving husband thinks I've lost my mind, but on my to-do list is researching the sports and the special Olympics so that Peter and I can start talking about what he wants to do. I remember watching a show about the Special Olympics on TV back in 1995 when Alexandra was Peter's age. I remember watching it and having a feeling deep down inside that one day I would be there like those parents on TV. Now I feel closer to that odd feeling so many years ago....so with that said, it is late (I am sure I am almost out of space) and it is time to go dream of the amazing future waiting for our family - each of our children in their uniqueness and wonderfulness with which God made them - each special, and loved and such a part of the blessed life I've been gifted. Good night everyone!! Love, catherine
