Tuesday, May 27, 2008

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

Monday, May 19, 2008

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.

Sunday, May 11, 2008

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

Friday, May 9, 2008

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)

Wednesday, May 7, 2008

Peter - Carepage - May 7th, 2008

Quickie Peter update (ha ha - we all know I'm not a person of few words!). First let me tell you one more time how incredibly blessed we are to have our wonderful pediatrician Dr. McCaffery! He personally called up to Children's Hospital and talked to Dr. Abman - a pulmonologist who leades the heart-lung center. He spoke to him for 30 minutes and asked him to personally take on Peter's case. The next day Dr. Abman's PA called us to ask question about Peter and start gathering the appropriate information. Dr Abman is going to be out of the country for a couple of weeks in May, but when we told them we needed to get in before the cardio appt on June 9th they said they see what they could do. Earlier this week they called - we have an appointment for May 27th. The exciting part is that they are in essence doing the sleep study at home. They are coordinating the delivery of equipment that we need to use at night - and that will in turn transmit the data to Children's so that they can review the data before we even go up - together with his operation notes and most recent echo. I am very hopeful about the care and thrilled with the attention Peter is getting. To top it off, Peter was featured in the newsletter that Children's sends to it's cardiac families....I'll need to see if I can scan and insert here some how. It is so cool that he was in this month's newsletter with Peter's first birthday being on Friday. I am taking the day off and plan on spoiling Peter more than he already is....and shhhhhh, don't tell him - we are getting him a seat that he can use to take baths with Tommy. Of course big brother Tommy is in on the secret and very excited. Tommy is taking his role as big brother quite seriously and is studying his sign language skills....now I know he is all boy because he repetoir so far includes eat, drink, cracker, cereal, diaper and potty. Hmmmm.....wonder if he had been a girl what he would have focused on learning. Of course diaper and potty are his favorite and he gets a big laugh. No doubt he'll soon be signing passing gas - as if the noise and odor were not already enough!! More Peter updates....he still has the cold he seemed to come down with last week right after his echo (maybe that impacted the numbers??). I thought it was a sinus infection because the drainage was thick and green and he was just not his normal happy self in the mornings. His appetite decreased which we are still struggling with. Dr. McCaffery put him on anti-biotics as he said the drainage plus dirty fingers in the mouth had given him a throat infection. I am hoping the meds kick in soon because he is totally off eating - even his favorites: strawberry yogurt and sweet potatoes (not together!). Extra prayers for Peter's healing. Yesterday Peter had his first eye exam. As I had shared with you before his eyes tend to roll into the middle - one eye more than the other recently. We never were too sure how much he could see. Well, doctor told John that Peter can see remarkably well....not sure what exactly that means - but that was encouraging. She also said that Peter needs two surgeries - one to fix a tear duct issue, and the second to correct the muscles that are causing the eyes to roll in. Unfortunately (or fortunately depending on perspective) Peter is not a good candidate for surgeries given his pulmonary hypertension and the severe de-sat episode he had under mild sedation for his hearing test. So until we get through the hypertension (holding onto hope here!) we need to massage his tear duct and..drum roll....need to get Peter little glasses to see if they will help his muscles. Have a feeling based on our experience with oxygen tubes that we will need super glue to keep them on! I told Peter that he is just so darn cute already, and the women go crazy about him that this might be too much. We will get him sexy little gold rim glasses for that professor-intellectual look and he'll be fighting off ladies! HUGS!! ck