Peter - Carepage - June 29th, 2008

Can you believe it is almost July? I feel like summer is going to be over faster than I can blink! This Wednesday will be exactly a year since Peter's open heart surgery....who would have thought that litttle, scrawny, green haired, mohawk Peter Bear would come this far given all his challenges and obstacles. The strapping young man he has become....in training for the Navy Seals or something - Peter is now a tall, happy, screeching, master army crawler. He's really taken off in the last week or so and actually has become quite adventurous. When we are upstairs he hangs out in the master bedroom (the room he shares with John & me!) while I run back and forth to the other rooms putting away laundry. No longer feeling the untold boundary of the doorway, Peter actually ventured out of the room on his own and comando style was super-secretely army crawling down the hall towards the kids room. WOW! That was the most awesome thing to watch. Now....he made it about 5 feet before getting cold feet, upon which he did a graceful pivot, roll, pivot (he get's perfect 10's for that move) and headed back to the master bedroom. Preferring the comfort of the untold boundaries, Peter can pretty much be found in any corner of our very large bedroom, and one time chased me into the bathroom. I need to teach him a lady needs her privacy! In addition to working on his mobility we are taking small steps forward with self feeding (have miles to go - seems like we take one step forward three steps back with feeds - but at least he is eating!). We are also taking baby steps in fine motor skills working on pincher grab and picking up smaller objects - and when sitting putting things in and out of a little pail....right now the thing goes in, we get frustrated that the pail ate the toy, the pail gets a good beating and then gets flung a few feet away during which time the toy falls out and Peter can grab it and we start again. Great indication of cognitive skills if you ask me - when in doubt use brute force! He's also started understanding peek-a-boo and laughing at it, as well as understanding that things are still around if you can't see them. I take the toy he is playing with, hide it under my hand or blanket, and he will lift the blanket or my hand so that he can get to the toy....way to go Peter boy! Last but not least - after weeks of fighting doctors, insurance and more doctors we have Peter's glasses! Now - we are excited because the blue brings out the sparkle in his little eyes....but Peter is not buying that! Most of the time he wants to be cool and wear them around his neck - but we when distracted (hush...don't tell him) we can keep them on for slightly longer periods of time. I am sure in Peter's world it is just one more thing on his face - glasses, oxygen tubes, tape and grips for the tubes, and twice a day steroid inhaler treatments....I'd be crabby about that! But, we figured over time he will get used to the glasses and hopefully that will improve his weak eye. I did post some new pictures - so check out the gallery! Love his scrunchy face as it is the first time we have captured that pose...and I just love when he gives me that face! Lastly, we are working on creating a blog for the whole family. The site is still under construction - but will keep you posted. We hope it will give us a little more freedom in updates, posting of pictures and honestly sharing our whole family - of which of course Peter is a very important and very loved part! Getting late and need to work tomorrow...ugh! Love to all!! catherine

"Mama thinks I look sooo cute in my glasses..."











"....I'm thinking not so much so!"

Peter - Carepage - June 10th, 2008

Wanted to give you an update on Mr. Peter....since we started thickening the milk two weeks ago he has gained a pound! He's moving up the charts and is now around the 50th percentile (DS chart)...at this rate they will give us a hard time about him being too big instead of too little! He seems to be doing better in terms of less coughing when eating, but he still intermittently spits up or down right pukes on us. While the swallow test showed aspiration during swallowing and not due to reflux, I think he may have a bit of reflux. Dr Duster our cardiologist suggested that we keep a close eye on Peter developing acid reflux - so one more thing on the never ending list...if I had known with Alexandra how much we had to worry about posture, motor skills, eating, lungs, heart, kidneys, etc she would likely be an only child! Peter had his cardiologist follow up yesterday and it was funny to see Dr Duster - about four or five times he was awful close to breaking out into a full dance as he chanted "I was right"....or "I won't say it again....but I was right!". He was very relieved that we have a "primary" cause for Peter's pulmonary hypertension and is optimistic that while Peter will always have a reactive pulmonary bed we are not (at this time) at risk for it becoming "fixed". He's suspected Peter was aspirating for 6 months and none of the other medical experts evaluating Peter agreed....now I know to jump on his suspisions faster. Had we tested Peter 6 months ago where would we be today?? If anyone has a time machine please let me know! The echo and EKG pretty much showed the same results as over the last several appointments. Peter was not saturating oxygen as well (second appointment with a decline). Dr Duster noted it in his log as a concern, but felt with all else we are working on it wasn't something to pursue. So at this time our focus remains the thickened milk and this week we start Peter on his inhaler. His glasses should be coming in soon - so much moving forward we hope. As to our moving....well, who knows! John and I had a long talk and were taking steps towards that direction in terms of preparing the house and researching locations. Dr Duster however said he put us in the category of "could move" not "should move". Each doctor seems to say things just a little different that challenges me all over again. There still is a part of me that just wants to get Peter to an environment that will over all be easier on him than stay here and second guess my decision every time he gets sick or if he gets worse. But, on the flip side, we have good medical facilities and love our doctors. Our kids are set in school and we have a good support system with friends from work, church and the neighborhood....If anyone has any words of wisdom please let me know! I think my emotion about the change is stopping me from really being confident that I am hearing God's voice through the noise in my head. Where is that giant God billboard when I really need it??!! Promise to try and get new pictures posted soon. Peter in just the last day or so has really taken off with his army crawl so that is exciting. He has also started babbling all over again! It is funny - generally with kids with DS, when they are working on a skill they drop others. Then when they master what they were working on, the others come back. I think Peter has been working on the sitting and crawling so had almost dropped all babble but for his loud outburst. John and I went away for a few days (THANK YOU GRANDMA & GRANDPA FOR BABYSITTING!!) and since we have come back he has not stopped talking! Today he has been army crawling all over the place. We met with his therapists yesterday and came up with his new/updated goals for the next 6 months....so we continue the path of two steps forward, one step back but always getting somewhere with Peter. And he is just soooo darn cute that he makes the journey FUN! Hoping for good advise! Love! catherine

Peter - Carepage - May 27th, 2008

The last couple of weeks Peter has been through a lot....so honestly I am glad to have a break until the 9th for the next cardio appointment. Peter's 12 month check up went fine except he is officially a peanut. On the "typical" kids chart he is so low I think it would be a negative percentile if that is possible - but on the DS growth chart he comes in around the 35th or 40th percentile with his 17lbs 9oz (approx) weight. He is just over 27 inches tall. Dr. McCaffery seemed pleased with him - but one thing I have learned is that no two doctors see Peter and see the same thing....that will make sense a little lower down. Last week we had the swallow test and that was not a pleasant experience....they pinned his arms behind his body, strapped him to a board, lay him on his side and expected him to drink a chalk like substance while they took x-rays. By the fact that we waited over an hour for our appt, you can imagine Peter's attitude....he was not a happy camper. Being the trooper he is he drank enough for a few good pictures and then was out of there wanting to be snuggled and sung to. Today we had the pulmonologist appt in Denver that pulled it all together....Peter's lungs are not in good shape. Especially the top right lobe that collapsed during his heart surgery. Based on the swallow test and where the lungs appear to be the most "cloudy" it is evident Peter is aspirating. That means that "food" is getting in his lungs. While commonly this is due to severe gastric reflux, in kids with DS it is often due to low muscle tone, larger tongues, etc. So instead of coming out of the stomach and into the lungs - it is directly into the lungs at the time he is eating. So, think of a time you've drunk something and it "goes down the wrong way"...that horrible feeling and need to cough it out - Peter has that pretty much with every feed. No wonder we've had feeding issues! In order to avoid aspiration we need to thicken Peter's liquids to a consistency closer to puree food - basically a LOT of rice cereal to the milk. The pulmonologist we saw (Dr. Wagner instead of Dr. Abmen) was actually more concerned about Peter's weight than his lungs - "failure to thrive" basically. While Peter is active and moving around, he isn't getting enough calories to sustain growth and it could be due to the lung damage or his overall health. We hope that the thickening of the milk will serve two purposes - to avoid aspiration and to help him gain weight. He did say that Peter would do better at sea level than here in Colorado - especially Colorado Springs - but given some of these other issues moving would not be the instant cure. If we have the opportunity to move we should jump on it, but if not wait another year and see how Peter progresses. He did say Peter would need to be on oxygen at least until he is two (another year of tubes!) and at that time we should be able to determine how well or not Peter will do in the altitude. There is no doubt sea level would be better, but until we get rid of the aspiration, get the lungs healthier, and Peter gaining weight - we can't tell how much better sea level would be. In addition to thickening the milk he has ordered an inhaler and he wants us to give Peter inhalations twice a day to help the lungs. They want us back in 3 months at TCH to re-evaluate his lungs and hopefully see improvements. I know this sounds like a downer (no pun intended) it is actually good...while a bit overwhelmed I finally feel empowered to do something to help Peter. We actually can do something that will improve his lungs and hopefully his pulmonary hypertension. They are still optimistic that if we can resolve some of these other issues his pulmonary pressures will improve. And while he will always be reactive and prone to PH, he can hopefully one day be off oxygen and lead a normal life...play soccer, go on sleep overs or take a date to a movie! Must run help John with the kids! Love, catherine

Peter - Carepage - May 19th, 2008

EXTRA PRAYERS PLEASE!! This will be short as I am at work. Had planned an update this weekend and it didn't happen so here you go. a. Peter had his chest x-ray late last week. By the look on the technician's face I don't think his lungs looked great - but - we didn't get a call asking us to take him in to the hospital so that is good. b. Peter has his 12 month check up tomorrow....will be great to see Dr. McCaffery again. Peter has been not eating well, and I can see he is getting long and slender - so a bit worried about that. He has also been a little crabby lately, so maybe it is teeth. For about 2 months now he has been the "one tooth wonder".....the partner tooth for his one bottom tooth has still not popped through. c. Peter has a swallow test on Thursday at Memorial Hospital. He needs to go in at 11am with an empty tummy. Then they will give him something to drink that they can see where it goes. Very high tech and my mind is shot right now.....will let you know how it goes. d. Peter has his pulmonologist appointment next Tuesday at Childrens. I am quite anxious as I am becoming more and more convinced that he does have some aspiration going on. John and I will be doing his nocturnal test tonight - he had a rough night last night - and will get that sent in. We did a test with our own machine last night and for the most part Peter was maintaining sats around 90 to 93%. So we shall see what they think about that. So with all Peter has in the next week or so, please send extra prayers his way. I know God has given us so many miracles, but we are asking for another. And maybe this time next year the oxygen tubes will be a thing of the past. I must confess that on Friday I was quite emotional. Friday was May 16th....exactly one year from the day we thought we would loose Peter, did a quick baptism at the hospital and rushed him up to Denver. Only to of course end the day with Peter in our arms for the first time since he was born. Wow! Look at how much has happened in a year! We hope this next year brings more healing and less drama! Must run back to work. Love, catherine ps. Still no glasses for Peter - fighting the insurance and I work for them! GRRRR.....but will keep you posted.

Peter - Carepage - May 11th, 2008 (Mother's Day)

HAPPY MOTHER'S DAY!!! I just wanted to wish all the women out there a wonderful Mother's day - we are all mother's in some way shape or form and have come to this loving gift in so many different ways - and for some it is even without children within the four walls of their homes. Thank you to all who have "mothered" me when I needed it over the last year....but of course the biggest thank you goes to my mother who brought me into this world, loved me, hugged me, kissed me and never stopped loving me despite all the ups and downs of life - including no doubt the terrible two's, the questioning tween years, the moody teenage years, the dramatic schooling years and now my own mothering years. And how can I not thank my mother-in-law....if not for her I wouldn't have the amazing husband I have today. She too has loved me and supported me and when needed come to Colorado to act as my mom away from home knowing how far my mother is and how hard it is for my mother not being around the corner, and how comforting it is to know that even though she is not here someone special has been here to give me a hug when I most need it. This time last year I sat in a room at Penrose St. Francis Hospital in Colorado Springs thinking we were days away from bringing Peter home....it was actually 31 more days before Peter would come home. I remember thinking last year that by this Mother's Day it would all be in the distant past and life would be going on....I guess in some ways I was right - Peter is home, life goes on, but unfortunately the illness the attacks Peter's little body isn't in the past. Who knows where we will be this time next year - how will Peter be doing - maybe even walking? Alexandra will be wrapping up 8th grade and what will that bring? Michael will be ending 5th grade on the verge of middle school and what joys will that bring? Jack will be wrapping up kindergarten and maybe loosing his baby teeth? Tommy will be close to school age - will I maybe win the lotto and get to home school him? (Shucks....keep forgetting I need to buy a ticket to win!) And of course that brings us back to Peter....will a miracle put this illness into the past, or will it not? So many questions only time will answer but I do know one thing....I've got 52 weeks to pray, live, laugh, love and yes sometimes cry. I have 52 weeks - each giving me 7 days with which I can chose how to live my life despite the circumstances around us. And I hope that this time next year I can look back and say I learned from my wrong choices and rejoiced in my good ones, but never stopped loving the opportunity to be mother to five wonderful kids!! And now my favorite prayer: God, grant me the SERENITY to accept the things I can not change, COURAGE to change the things I can, and WISDOM to know the difference. May the Lord bless us all with serenity, courage, wisdom, faith and love on this Mother's Day!! Love, catherine

Peter - Carepage - May 9th, 2008 (Peter's 1st Birthday)

HAPPY BIRTHDAY TO PETER!! Can you believe it??!! Peter is ONE today....unbelievable!! Peter woke up early this morning so that he could get some snuggle time in bed. He enjoyed a yogurt breakfast and some milk. After a little nap he was ready for an OT session with Miss Renate. They played rolling the ball, exercising on the big ball and hanging out with Tommy. Then it was time for lunch and Peter was cranky - the sight of food made him scream. Renate and I gave up - and let him just have a bottle. The boys and I then loaded up in the car and went to the library where we read some books together. I was able to bribe Tommy out of the library by promising a Starbucks. So off to King Soopers we went. Peter zonked out in the car so missed the penny horse ride and the frap Tommy & I shared. We ran a few errands before picking up Alexandra and Jack from school. We then came home for a mid afternoon feed which Peter enjoyed - green beans & rice! He hung out on my bed with Alexandra, Tommy and Jack watching a little PBS before we headed back out. Alexandra had "Leadership" so the boys and I headed down to pick up Peter's bath seat (it wasn't easy to find it!). We picked up Alexandra and a pizza - which we enjoyed out on the back deck. I made a little birthday hat for Peter, and after his dinner he tried out the bath seat and bath book he got for his birthday. All was fun and games until the two older boys got too wet-n-wild....and Peter wanted out. After some snuggle time and warm milk he was out like a light. So he is resting upstairs as I post this update. The Year in Review: (and goodness knows I am missing some milestones here)....Peter rushed into the world early, got sick, spent 5 weeks in the NICU including pulmonary hypertension, kidney failure, heart failure and feeding issues, then had open heart surgery, a collapsed lung, throat infection where he was intubated and still more feeding issues.....a few colds, a lot of meds and tons of love later Peter has learned to roll both ways, smile, cross midline, eat his toes, play with his fingers, hold a prayerful hand position...he's learned yogurt and sweet potatoes can be yummy and with some good exercises eating isn't that hard...he has learned to smile and laugh, to rock his head with good music, babble a conversation and hold a face still to give big wet-suck-face type kisses....he can sit but sometimes needs support, loves to push into standing position and play music and ball games....he says things that sound a lot like "mama" "papa" and "I love you"....he is starting to sign food, mother and father...he has mastered the pivot and roll method of getting around and throws in a good army roll when motivated...he has shown us all how to love, laugh and persevere through the good times and the not so good. How many of us can say we have done all that in a year?! And I can't help but believe that through this all Peter has learned the most important lesson of all - that he is loved beyond any level of human measurement! And then there is us...the family lucky enough to be blessed by Peter...we have learned that sometimes things are hard and we feel defeated, we have learned that bad things can happen to the most amazing of people, we have learned that it is ok to be afraid and question life - as long as we share our fears and questions with God so that He can strengthen us....we have learned that we are not in charge no matter how much we try and that sometimes prayers don't get answered how and when we want....we have learned that our attitude is contagious and a smile really can light up a room....we have learned it is ok to be imperfect as long as we are imperfectly us....we have learned that the smallest accomplishments can bring the most joy and deserve big celebrations. But most of all - we have learned the power of love, faith and family will get us through the good days and the bad. Thank you for sharing this year with us! Love, catherine

Doing OT with Ms Renate playing with ball dinner outside!

First time in the big bath! Peter Bear with Tommy (2) and Jack (5)