Wednesday, April 30, 2008

Peter - Carepage - April 30th, 2008

Sorry for y'all that read the carepages last night and waited for pictures - I never got them up. Instead I spent a couple of hours talking to a new friend in Maryland. Her son Ryan is 5 and is going through much of what Peter is too. While I talked too much as usual - it gave us an opportunity to compare notes and she made me feel much better about the support we are getting locally. One of the top specialists in the USA for pediatric pulmonary hypertension is at TCH and knows Peter's case from when Peter was admitted last year. She also sent me pictures of Ryan when he was little and the resemblance is remarkable - same big blue eyes and blonde hair. Ryan is having procedures done next week to determine the status of his pulmonary hypertension - please keep him in your prayers too. Quick update - Dr. McCaffery talked to TCH today and described Peter's case. They agreed it made sense to have Peter evaluated in Denver, so now we are waiting for them to contact us so that we can set up the appointment - yeah! I also talked to our cardiologist Dr Duster and gave him the status. He was disappointed with the delay locally for an appointment and is supportive of Peter going to TCH. He did however indicate that if there is a lengthy delay up there too he will start ordering the tests that need to be done and evaluate them himself with additional support of specialists - instead of waiting for an appointment with an actual pulmonologist. I mentioned to him my desire to have Dr. Ivy at TCH. Dr. Ivy is the pediatric cardiologist with a specialty in pulmonary hypertenstion that I mentioned above. Again Dr Duster was supportive. So it seems we have marching orders, and just need to get the times set up to get the tests completed. It is so comforting to know that we are no longer sitting back and hoping for the best, but actually taking the necessary steps to help Peter get better. And speaking of my little angel - there are new photos posted so please check them out. These are of one of our more successful attempts at self feeding - but the pictures speak a thousand words so I think it will be clear how he did. He was proud of himself, just as we are too. I have to share Peter's budding love of music. As you know Peter has had music therapy once a week since he first came home from the hospital. Cathy has worked hard with Peter on making choices, sitting, crossing midline and introducing sign language. Well, Mr Peter has taken his request for music to a whole new level. Not only does he rest and eat better if you sing a calming song to him - but now he is asking for songs. He will say "ba-ba" to which we respond with "Ba ba black sheep" and end with the third bag of wool going to "Peter Bear" who lives down the lane. When we are done he will wait a few seconds and say "ba-ba" again and we sing again, and we follow this routine till honestly we give in and re-direct him. Every time you get to "Peter Bear" in the song he smiles real big. He also loves the song that starts "Down by the station, early in the morning..." and when you get to the part that talks about the station master pulling the little handle he will reach up and pull your finger. Cathy has been working with him for months on that. But he knows when that part of the song is coming up and will look for "the little handle" to pull. So here is where Peter has cracked us up beyond belief....he has taken to Stevie Wonder - remember him? Well, a few seconds into a song if he likes it he starts swinging his head back and forth "a la Stevie Wonder".....and then if we stop singing and he wants more he'll start rocking his head back and forth until you sing again and then gets a big smile on his face. It is just too funny - we really should get it on video! For you who know me well - I am extremely challenged musically with a repetoir of 5 songs - so a testament to Peter's loving heart that he puts up with my singing! Thanks for your support & encouragement! ck

Tuesday, April 29, 2008

Peter - Carepage - April 29th, 2008

Peter had his cardiologist appointment yesterday. Good news: he hasn't got worse and is responding to oxygen. The bad news: he hasn't got better. I went into the appointment ready to demand more action be taken on Peter's case just to have the doctor beat me to the punch. Basically we have "sat and waited" as long as we can for the pulmonary hypertension to improve and it hasn't. The cardiologist is at a loss on this, so now believes that the issue is caused by problems with the lungs and not the heart. I know this is going to get complicated, so I'll try to keep it at the 50,000 ft level. The original thought was the pulmonary hypertension was caused by the heart condition - which is the case in 90-something percent of the cases. Peter's heart was repaired last July 2nd. His pressure improved two weeks after surgery, and have remained the same since then. We now need to explore other primary conditions that could be causing him to not improve - so it is time to start testing the lungs. Cardiologist listed a bunch of different potential situations - none of which was minor....some are more "repairable" pulmonary conditions some are not, and unknown would be the damage already done to the lungs that would not be reversable. He asked that we see the one pediatric pulmonologist in Colorado Springs and get the tests done before our next appointment on June 9th. Called the pulmonologist to be told that the earliest they could get me in was August....mmmm... NO! So, I called good old Dr. McCaffery (our pediatrician) to enlist his help. He was honest in telling me I would not like the local doctor and would likely end back up at The Children's Hospital wasting time and putting Peter through the same battle of tests all over again. So he is currently working to get Peter referred up to TCH in Denver. We are waiting to hear back, but we could be there at least over night as the tests include a sleep study amongst other quite invasive testing. If the lungs don't show the cause for the continued pulmonary hypertension, then they will catherize his heart again and see if there is something they missed from a cardiac perspective. Needless to say I was quite emotional yesterday - but today am feeling better and ready to fight a good battle! And now is when I get emotional again - the hard part is knowing that we are racing against time now. While Peter is currently responding to oxygen, if that changes the battle is lost and it would be watching Peter struggle harder and harder to breathe until his lungs gave out on him. So time is not our friend right now. I struggle because I pray, and pray, and pray for Peter to be healed....and I know deep down inside that one day God will answer my prayers - but I also know that the answer may not be what I am looking for - the answer may be taking Peter back up to heaven. I try to get my arms around that - and wish I could say I am this inspiring faith-filled person that could accept that. But, I am not...Peter inspires me to be more that way - but the thought of not having him in my life to inspire me each and every day breaks my heart into a million pieces, tightens my throat to where I struggle to breath and ultimately crushes me. I refuse to give up hope even when I am told there is no more hope as Peter needs me to have that. So, with more tears in my eyes again - here we go - swords drawn and our eye on the prize, we begin another battle for our little boy's life. Please keep praying for Peter!! To end on a higher note - guess what? - Peter is even cuter than last time! I promise to get pics posted later tonight (so please come back!). He is doing really well at sitting, is working on army crawl, we are working on self-feeding but have a way to go there! We will be starting cows milk soon...and will celebrate 1st birthday on May 9th. Peter gives his best every day! I say it again - if I were 1/2 the person Peter is, I'd be a million times better than I am today. HUGS! catherine

Sunday, April 6, 2008

Peter - Carepage - April 6th, 2008

I got a few e-mails asking me if I got Peter's PT book autographed. I had meant to include it in my update, but obviously forgot in the rush of things. So here we go - I mentioned to her that we had the book, and took it out to reference it to what she was discussing around Peter. I took the opportunity about half way through our session to point out that I would like her to autograph the book. She laughed and sort of went yeah-yeah. Well towards the end of the session I reminded her that we wanted to book autographed - she sort of laughed again and said ok to which I smiling responded I was serious. When she realized I was not joking, with a big smile asked if she should autograph it to Peter or to me - I said Peter. Then I said "You probably get this all the time, huh?" to which she answered "No, not really....actually, I think you're the first!". Leave it to me! Either way - I'm thrilled and Peter has a nice note of support and encouragement in his book! Love, catherine

Saturday, April 5, 2008

Peter - Carepage - April 5th, 2008

Just a quick update on Mr. Peter Bear's PT appointment up in Denver....WOW!! It was amazing!! Of course all hell broke loose at work, I was running late, picked up Kerry (our therapist) in Gleneagle and raced up to Denver. By the grace of God we got there barely on time. Patricia Winders was in the waiting area looking out for us. A small slender woman with a warm smile and a true sparkle in her eye. I had so much invested in this appointment that I would have been devastated if she was unpleasant or didn't like me. Well, she was so much more than I could ever have hoped for. She is a truly compassionate person who enjoys the kids and what she does. She was on the floor with Peter just playing and observing. She shared what she saw, her thoughts and what we should work on. My son of course was PERFECT!! Oh my goodness. The difference between being on the carpet and being on a pad was amazing. Peter pivoted and stretched, used his legs and his arms, he played with toys, knocked over blocks, sat and stood and talked and smiled. He had a GREAT time!! She said he was between mild to moderate on low muscle tone which explains why he is so active. She said he is definitely "motor driven" - which means he is inclined to move around to explore vs. being more still and observing. What she was thrilled about was that Peter demonstrated a high degree of being "purpose driven" - so he knows what he wants and will figure out the best way to get it. I expected to be there an hour but we were there for two. She taught Peter how to army crawl and gave us a short list of skills to work on. Overall Peter is close or on track with some gross motor skills compared to average for kids with DS, and well ahead on other skills.....YEAH PETER!! I was so proud of him!! Kerry is going to help us master some of the movements we need to do with Peter, and I am hoping to pick up a mat this weekend that we can have Peter play on. All in all it was truly amazing - it was an incredible learning experience and I was on cloud nine the rest of the day. And this is the truly wonderful news - they are developing a Down Syndrome Center at Children's Hospital - so medical, PT, OT, etc. A true center that will be dedicated to understanding and meeting the needs of our amazing little kids. WOW!!!!!! I think Peter too was excited about the whole day, so he came home with a healthy apetite and desire to keep moving forward. In the spirit of trying something new he actually worked on table food last night. While he really won't yet grab food and put in his mouth - I fed him some sweet peas of my dinner plate and he gummed them and swallowed them. That is such a long way from the kid who wouldn't eat and almost needed a feeding tube. What a miracle!! He is still eating his solids well, and the last couple of days has started drinking well again - so that has been a huge stress reliever. Anyway - busy weekend in store so I better run get ready - but I wanted to share what an amazing day it was yesterday. And I hope you had a chance to see the new pictures of Peter....such a cutie!! Wishing you all well! catherine

Thursday, April 3, 2008

Peter - Carepage - April 3rd, 2008 quick Peter update. Yesterday he had his sedated hearing test. He didn't like the taste of the medicine, but after screaming for about 10 minutes was out like a light. The good news is that they told John that Peter passed his hearing test. Yeah! I am hoping to talk to the doctor because she told John that Peter was borderline for mid-range.....I don't know what that means. But, he passed - and that is great! The not-so-good part is that they were unhappy with Peter's saturation levels. He is normally on 1/2 liter of oxygen. After they sedated him his sats dropped into the 70's. They upped his oxygen to 4 liters (yes - FOUR!!) and still could not get his saturations up. The doctor told John she believes Peter de-sats when he is sleeping and we don't know it. Of course that freaked me out so I was up from midnight to 2am partially pacing around the house because my stress level was through the roof....about a lot of things, so this was just one more thing on top of all the other 20 million things racing through my head. Today John decided to check Peter's sats at home. He was fine and after he fell asleep he actually was at 100%. Yeah but also hmmmm.....makes you wonder. Now, my theory is that maybe he has sleep apnea or something, but at home he sleeps on his tummy so his tongue can't drop back. But during the test he was on his back. I don't know! The doctor said she was calling our cardiologist but we didn't get any calls today so not sure what the next step is - but will keep you posted. On a good side Peter is showing a tiny bit of improvement in his appetite - so hoping it will continue to get better. He has his PT assessment in Denver on Friday - looking forward to that. We also need to get his eye appointment set up. Other than that Peter really has (knock on wood) been quite healthy!! Like I mentioned his next echo is on April 28th - so anxious for the appointment and hopeful that it will be positive. It will be good to meet with Dr. Duster again and really get his perspective on all that is going on. Thank you for your prayers and on-going support - we reaaaaaaally appreciate it! HUGS! catherine (PS. promise to get new pictures updated very soon!)