tag:blogger.com,1999:blog-81591125325345072692024-03-05T16:12:25.916-05:00The Georgia WimberlysKathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.comBlogger165125tag:blogger.com,1999:blog-8159112532534507269.post-75479336452520081592014-02-20T22:22:00.000-05:002014-02-20T22:22:48.687-05:00And We Wait...I feel like every 3 months when we attend Sam's quarterly cardiac check up, it's one of two things. 1: Prepare yourself for impending surgery. 2: Let's hold off surgery. <br />
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The last few visits, Sam has been trending downward with his blood oxygen levels. This is expected as he gets bigger and 'outgrows' his Glenn Circulation from his first surgery. This is our first indicator of need for further procedures. Additionally, things are getting harder for him. Climbing our stairs in the house is tough. Keeping up with his 2 year old brother is getting tough. Walking from one end of his school to the other for lunch is tough. We were prepared at our last few visits to expect the decision for his Fontan surgery to be made at THIS appointment. I prepared myself mentally for this for months now. I was ready to say yes, let's do this. <br />
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Naturally, today our cardiologist decided to throw a curve ball and suggest we wait it out a little longer!<br />
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This is a good thing, you ask? Well, it's complicated.<br />
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We have known from day one that Sam would need this upcoming surgery. We also knew it was essentially the last surgical 'fix'. After this surgery, the clock starts to tick towards transplant. So yes, the longer we wait, we assume we are giving him more time before he has to cross that bridge. But, if we wait it also means he will continue to get weaker. He will continue to struggle with keeping up with his brothers and classmates, and the older he gets the more he realizes he is different. The longer we wait, the longer his body has to survive on super low oxygen levels. He's never been above 85% oxygen, and he is now sitting at 79-80%. Organs start to 'fail' in the 70s. The plan is not to let him get below 75%. But what damage is being done NOW? Studies show kids with cyanotic heart defects have higher incidences of ADD and learning disabilities, among other issues, linked to chronic low oxygen. <br />
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If we go ahead and have the surgery, Sam's blood oxygen will end up in the mid to low 90s. He will have more energy for both motor and cognitive function. But, that clock till transplant starts to tick. Along with other clocks. The Fontan surgery has serious side effects. Liver damage and a specific bowel/protein issue are not uncommon and are sadly both fatal and/or limiting to the ability to be listed for transplant. Scar tissue from multiple procedures leaves these kids at risk for heart rhythm issues that lead to pacemakers. Not to mention the addition of several other daily medications he will take for the rest of his life. <br />
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Today, our cardiologist said he thinks it's worth waiting another three months to make the decision. We are buying him three months (assuming no emergencies). Potentially, we will buy him three more months if he looks stable at his next check up. We are basically just going to live this out every three months until it's time. When your cardiologist says, "If he were mine, I would wait"...you wait. So we decided low oxygen and poor endurance are worth potentially giving him at least three more months on his clocks. <br />
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I know it sounds all doom and gloom. It is just the reality of his condition. He looks so healthy. He's the tallest kid in his class. He's so smart; so funny. No one would guess what is happening inside. It's so easy for us to ignore it, too. We have found little ways to get around it. He still rides in the grocery cart - he can't hardly make it around the store. He still rides in a stroller for long distance stuff - you should see the looks people give us. But once every three months at his check up, we get to face the reality of it all. <br />
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I took a beautiful video of part of Sam's Echocardiogram. This is an ultrasound of Sam's heart. A healthy heart has 4 chambers. Separating the upper and lower chamber on each side of a normal heart is a valve. Sam is missing the valve on the right side, so a lower right chamber never developed. Additionally, the upper left and right chambers are missing most of the wall between them. In the video, you can see what looks like one large upper chamber, one functioning valve, and one large lower chamber. Truly, half a heart. I tried to find a normal heart echo for comparison. <br />
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Sam's Heart on Echo<br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dz0UDwW5Hx8TmBSj1deXSjNz8KVwK4R1S1oGjRh8ItIkXrgiwL0d61BEHObRwAz8jYw8z47Ktag-w9UHcuAQg' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
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Normal Heart on Echo<br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzCNGK0_3mmnyQ49xBSfBsLauPnKwriagVjIiGjDy5GCORuIhecgjiKa0y-RJ9sFnnWm7rwyraSJ7K_brcfpg' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
<br />Kathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com1tag:blogger.com,1999:blog-8159112532534507269.post-32292077306954345282013-08-10T14:30:00.001-04:002013-08-10T14:30:25.132-04:00What a Summer...Now that I'm a PT for the school system, I get to have summers off. I kept all three boys home with me. It is beyond-words-amazing! There were certainly times I felt like I was about to go crazy. And now that it has come to an end, I'm ready to move back into a real routine for all of us. But we had a great, eventful summer and I can't wait until the next one.<br />
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Sam kicked the summer off with swim lessons. He LOVED his teacher, and begged to go every single day. She was wonderful with him and he learned so much! She moved to Colorado mid summer which was traumatic. It is so hard to take all three boys to the pool together, since they technically all three still need one on one attention in the water. I'm glad Sam go so much one on one attention with just his teacher this summer.<br />
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We had quite a few adventures this summer. We rented a bay house on Mobile Bay with Chris's family. His sister and her kids came down from Virginia, along with the rest of his siblings from the Mobile area. The kids had a GREAT time swimming and catching crabs and fish. We will certainly try to do that again. While in Mobile, I helped Chris's family take some updated family photos. We also got to attend the 50th Anniversary celebration of Chris's Aunt and Uncle. Lots of good family time!<br />
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On the same trip, I took the kids over with my parents to Baton Rouge to welcome my brother John home. He has been in Afghanistan for10 months or so, and the welcome home ceremony was really sweet. <br />
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Not long after we returned from that trip, we all hopped on a plane to California. The plane rides were less painful with all three boys than I was anticipating, but still made me crave a Jack and Coke or 5. We got to spend time with my Grandmother at her mountain cabin, where she met Gabriel for the first time. My three kids are her three great grand kids so I'm sure it's very special to see them. The two big boys loved getting dirty in her gardens and visiting her little town's ice cream parlor (OK, Gabe liked it too). The loved the cabin's spiral staircase and loved sleeping in my uncle's camper trailer. We got to visit St. Andrew's Abbey, a family favorite. Also got to take the kids on a hike at Devil's Punchbowl (which was a serious mistake but something to laugh about after it was all over). Gabe got to touch the Pacific for the first time at Dog Beach in the Huntington Beach area. Sam and Luke got soaking wet in the Pacific themselves, and could have cared less that the water was freezing and the wind chill was near the 50s. <br />
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As a super special unexpected treat, we were gifted free tickets to DISNEYLAND by a friend of my Aunt and Uncle's. My parent's kept Gabe, and Chris and I took Sam and Luke to the park for the day. We got to the park the second it opened, and went straight to the Buzz Lightyear ride, which we walked on three times in a row. I'm pretty sure the boys would have been happy to just ride that the rest of the day. It was really special to be able to take them on some of the rides that I remember going on as a kid. And just as special to take Chris there, as he had never been to any Disney park. Luke even worked in a nap around lunch time, when he completely passed out in Chris's arms! My parent's picked up the boys late in the afternoon and Chris and I spent the rest of the night riding the bigger rides. All in all we had a super fun, laid back trip to California, and as usual it was bittersweet to leave. <br />
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The week we got home, I started back to work and the kids started back at daycare. I was ready for some routine in all our lives, and the boys adjusted surprisingly fast. Sam started Pre-K at St. Joseph's Catholic School this week. He is so so thrilled about every little detail of his new school and new friends. On the first day, he told me he talked to God. I asked him "Did you pray?" to which he responded, "Yeah! That's how you talk to God. He lived on the moon. THAT'S the REAL God." I do believe there was some kind of miscommunication there!! I can't believe how big he is getting. <br />
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The bad news is he IS getting big. Physically, he is clearly beginning to struggle with his oxygen levels, which decrease as he grows. We knew this was how it was supposed to happen, but at the same time there does seem to have been an obvious sudden decrease in his functional capacity just in the last two weeks. Could be the heat of the summer, could be some lagging issues related to higher altitudes he experienced in California (although he was not at all bothered by it then). It is difficult for him just to walk the little walk from the car to his Pre-K room. It is hard to walk to the cafeteria from his room, which is clear on the other side of the school. He doesn't seem to notice, but I do. He is breathing like I do when I go run. Two words, deep breath, two words, deep breath...and so on. Sitting, you would never know. But after walking 10 yards of so, it starts kicking in. We moved up his cardiology appointment to Thursday of this upcoming week. Assuming no unexpected change has occurred that might be causing this, we will likely begin planning for Sam's next surgery. I'm not ready. And at the same time I'm totally over having to watch him struggle to keep up walking just short distances. Bleh. Look for an update after his appointment Thursday.Kathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com1tag:blogger.com,1999:blog-8159112532534507269.post-42810698130794592772013-06-08T22:23:00.000-04:002013-06-08T22:23:18.413-04:00Lukey Duke's 2nd BirthdayMy lil man Luke turned 2 this week. He is such a wild, wide open little boy. I feel like he has been around a lot longer than 2 years, and yet he was just a tiny baby a few weeks ago! He is rough and tumble, and is so physical. His language is exploding, and he has a huge vocabulary and great conversation skills. He loves his brothers, especially Sam. He does EVERYTHING Sam does, and is his constant shadow. He is a boy through and through - he loves planes, trucks, cars, and dirt. He has this super cute voice, with a little bit of rasp. His blue blue eyes have turned to a hazel green, but are just as beautiful. He dances whenever he hears music. He's just a dream. <br />
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We had a little neighborhood party for him - invited our immediate neighbors and a few friends. We made it a super hero theme since Luke is a tough man. I did some pintrest digging and found some cute decorations and ideas. I did a quick sew cape for all the kids, and had a mask making station. We had a piñata, which was really fun to watch. Luke had a special "Super Luke" cake. He thoroughly enjoyed running around the backyard with the big kids. I'm pretty sure he had no idea it was his birthday OR that everyone was there in his honor but he had an AMAZING time. <br />
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Sometimes I feel like I didn't get to experience as much of Luke's babyhood as I did of Sam's. Maybe I was just more 'aware' with Sam. I look at Luke now and see a little boy, not a toddler or baby. It makes me sad and yet I LOVE watching his personality develop and shine. And trust me...it is blinding! Love you, Lukey Duke!<br />
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Kathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com0tag:blogger.com,1999:blog-8159112532534507269.post-90989943590886035052013-05-24T09:57:00.000-04:002013-05-24T13:32:24.832-04:00Life LatelyOk. I'm bad at keeping this thing updated. Clearly. In my defense, life has been a little busy. Here is a BRIEF, photo assisted recap of the events in our life since my last update 7 months ago. It was really hard to choose just ONE photo from each event to post, FYI.<br />
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Halloween. Luke wasn't impressed. Sam loved his Knight costume...HATED having to walk the neighborhood. <br />
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My best friend got married in New Orleans. Truth be told, when I first discovered I was pregnant, one of my first thoughts was how I wouldn't be able to 'enjoy' this event as much as I would have liked to. But I paraded my belly down Bourbon St anyway!<br />
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Sam turned 4. I don't know how. I tried to keep it from happening. Alas, he is getting bigger everyday and it's one of those things out of our control. My baby is 4. We celebrated in Mobile with family and hometown high school friends, and many of our friends own children. It was strange and sweet to see kids we grew up with now growing kids of their own.<br />
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We attended Kids at Heart's Christmas party, something we look forward to every year. Here is Sam and his sweet heart buddy Emery.<br />
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We hung out with Santa. Luke wasn't a fan.<br />
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Christmas Morning. Love this photo of them wondering around, still in shock over the new stuff packing the living room. My parents and sister were with us for Christmas. Although they really just came up to await the birth of our new little man. I really tried to have him before Christmas but again, out of my control.<br />
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Gabriel Matthew did finally arrive on December 29, minutes before midnight. December 30th is our wedding anniversary. This photo is Chris and I having a take-out dinner and tv-movie date in my hospital bed with our new lil babe to celebrate 6 years of marriage! Gabe was 7lbs 8oz, and his little face was a near identical match to Luke's. From the time I walked into the hospital to the time he was born was only about 4 hours, and I got my epidural about 25 min before he was born. Good thing we didn't wait to long to go in to the hospital!<br />
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Brothers. Luke and Sam loved Gabe right away. Luke wasn't a fan of the hospital, but was fine with Gabe once we got home. They love getting right in his face and talking to him.<br />
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Chris got a last minute call that he was on the list to ride with his Mardi Gras association. I took the boys to his parade and (with the help of Chris's family and sweet friends), the boys got to see Daddy on the float. I'm not so sure they understood what was going on, but Daddy did get to throw them some special toys which they appreciated.<br />
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Chris's brother and sister-in-law came up for a visit with their daughter, Penelope. We all went to the Atlanta aquarium. Sam and Penelope really do look similar (although this photo isn't the best, but it was the only one where both of them were looking and smiling). <br />
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"The Walking Dead" fans - we live about an hour from the town where they filmed a great deal of this last season's show. We made a lil visit.<br />
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Gabriel was baptized in Mobile in February. Chris's brother is the Godfather, and my BFF (from highschool, my college roomie, and my bridesmaid) is the Godmother. Fr. Savoie, who was assigned to Chris and my gradeschool for his first assignment out of the seminary when Chris and I were in 7th grade performed the Baptism. Fr. Savoie has known us since I was taller than Chris. <br />
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We took the kids to see Yo Gabba Gabba Live in Atlanta. We didn't tell them until we got in the theatre. They were SO excited. But when the REAL DJ Lance Rock came onto the stage, Luke FREAKED out. I don't think his brain could really process how this 2D character just jumped out in 3D onto the stage. Luke spent most of the concert in shock. Sam LOVED every second. We had great first row balcony seats, and Sam danced in the aisle the whole time.<br />
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In March we drove from Macon to Virginia to spend a week with Chris's sister and her family. It was a nightmare. Luke was sick the day before we left, but seemed to recover by the time we got to Virginia. Unfortunately he brought the stomach bug with us, and it hit nearly everyone in the house. We spent a week cleaning vomit from kids in both families. But looking back I can ALMOST laugh about it. We did get to see snow, and we took the kids to the Museum of Natural History in DC.<br />
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On our way back home from Virginia, we met my parents in Gatlinburg at their cabin to celebrate Easter. We (barely) made it through Easter Vigil mass, dyed eggs, had an egg hunt, and played with toys care of the Easter Bunny. We left Sam with my parents for a few extra vacation days, and we took the other kids back to Macon. Luke got some much needed (almost) one on one time with us at home, and Sam got spoiled by Nana and Pop Pop.<br />
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We took a whirlwind weekend trip to Savannah to see some friends who live in Chicago. We took a trip to Tybee Island. The boys LOVED every second. Sam cried and sobbed when we had to leave the beach.<br />
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Just a quick note about Gabe. He is an angel. This kid is so laid back. And Thank GOD!! I don't know how we would survive if he wasn't. He smiles at everyone and is hardly ever fussy. <br />
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While Gabe is laid back, Luke is a wild man. We decided to build a fence around our backyard to help contain him. Additionally, you really can't see our backyard from any functional location in our house, and I want to be able to send them outside to play without me necessarily having to be right there with them. Here is Luke 'helping'.<br />
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Sam played t-ball this Spring. It was a little scary for us, as I didn't want to find out he physically couldn't manage it. But we ended up on a great little team, with coaches who were super relaxed and not at all pushy about winning. Sam enjoyed batting, and running the bases (although he is not an overly skilled runner). He greatly disliked playing defense, and got bored quick. But we really had a great time watching, and I see many baseball seasons in our future.<br />
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There were a handful of other occurrences over the last 7 months: -I now work as a PT in our public school system. I love working with kids again, but often have to deal with kids who have very difficult home lives. It reminds me daily of how lucky I was growing up, and how much I want to continue to provide my kids with all the love I can manage. -We had to make a tough decision and put our sweet dog to sleep. He got a tumor and gradually seemed less and less comfortable. It was tragic, but we will remember our many many good days with him. -Our hot water heater (located in the attic) busted and flooded our master bedroom. We spent half a week in a local hotel while a crew cleaned the mess. The boys LOVED the hotel. I nearly went insane, as Chris was out of town on a business trip and missed all the 'fun'. <br />
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Summer has started for me! I am spending the next week deep cleaning the house, organizing, throwing things out, etc. Then I will have all three boys home with me for a whole 8 weeks! We have lots of plans. Swim lessons, story time at the library, a trip to California...it will be a good summer. I will do my best to update a little more frequently!<br />
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~Kathy<br />
<br />Kathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com3tag:blogger.com,1999:blog-8159112532534507269.post-18998724498734634622012-10-05T21:13:00.000-04:002012-10-05T21:13:40.200-04:00Change of Plans?Chris and I went to a fetal echo to clear baby #3 of any heart defects. Since Sam's defect is so major, we do have a slightly higher chance of having another baby with a heart defect even though there is no evidence of genetic link. Because of this our doctor suggests a fetal echo with any future baby just to be sure and to set plans should anything pop up. Baby #3 was nice and calm and the echo tech got all the photos she needed in 15 min. She and Sam's Cardiologist, Dr Cardis, cleared baby #3 of any major defects which is very comforting.<br />
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While we were there Dr Cardis took some time to talk to us about some information he recently got at a conference with some adult congenital heart defect cardiologists (a NEW specialty, considering people with major heart defects only recently began making it to adulthood thanks to new medical procedures). He was speaking with the Emory Clinic's Adult congenital heart defect specialist about Sam specifically. He said this specialist advised him to wait as long as possible, regardless of time of year or exhaustion levels, to have Sam's Fontan. Although all the reasons are unclear, there are many negative effects after the Fontan. Heart attacks, strokes, liver failure, and protein losing enteropathy (which is almost always fatal withing 5 years of diagnosis) are the worst, but others exist. This specialist feels it is better for these kids to be blue (meaning have a super low blood oxygen count) and miss out of physical activity than to have the Fontan and put themselves at risk for the side effects any earlier than necessary. The Fontan is NECESSARY...Sam won't live without it. But he wants to buy as much time without these side effects as possible.<br />
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So now the game plan is sit...and wait...and just take it a day at a time. If possible, we will continue to put Sam's next surgery off indefinitely. I'm torn. It is physically painful to see Sam exhaust so quickly. And we are supposed to just let that go as long as we can?!? But then again, if we jumped into the Fontan early and then he had one of the major side effects, I don't think I could live with myself. <br />
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Two sad stories of Sam's capacity for physical activity from this week: I arrived at Sam's daycare to find the whole class running laps around the play ground. Except I didn't see Sam. When I walked up I realized Sam was sitting by himself in the sand, exhausted. I asked the teacher why they were running laps and she said the kids wanted to race. I was pissed that 1) she didn't recognize Sam might be having problems keeping up and might need to be checked on and 2) that Sam was just allowed to sit all alone while everyone continued to play. I spoke with the director and told her Sam doesn't need to be ELIMINATED from physical activity, but when it is clear he is struggling, they need to find a way to creatively keep him engaged. In this scenario, would it have really been so hard to say to Sam why don't you come help me pick the winner of the race, instead of letting him sit breathless in the sand alone?? And then this afternoon, Sam and 4 of our neighbors' kids were jumping on a trampoline in our neighbor's yard. After about 60 seconds I saw Sam sit down on the trampoline and start to cough. Chris ran over and pulled him off the trampoline but he couldn't catch his breath and kept coughing until he threw up. He started to cry and said he really needed to rest. Broke me. And it's so hard to explain to people while he is out of breath or coughing or just beat after just a few minutes of play.<br />
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On the flip side, we attended a fall festival for the Kids at Heart group, a support group for kids like Sam, at a farm in McDonough. He walked a lot, and never once told us he was tired or looked overly out of breath. <br />
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Bottom line is we can't compare him to other kids. When we compare him to other kids, he will never ever compare favorably. He will always look sickly and incapable. But when we compare him to him...his physical capacity for activity today vs last month vs the month before...not much has changed. And THAT is how we need to decide when this surgery will be necessary. And I'm fine with that. But it is indescribably painful to have to watch your child, who looks and talks and acts like every other kid, NOT get to be a normal kid. And it's so painful to see in his face that he doesn't understand why. <br />
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We have a busy weekend coming up...work for both Chris and I, a trip to a Greek Festival, and a trip to the fair. Hopefully lots of fun and lots of good pictures to come. Here are a few from the Fall Festival. I can't tell you how much I appreciate the Kids at Heart group. We have met several families while children Sam's age with similar defects, and I hope they will learn to lean on each other as they get older and be able to find belonging in this special and rare medical-life journey they share.<br />
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Kathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com0tag:blogger.com,1999:blog-8159112532534507269.post-78881630340019361812012-09-18T21:39:00.001-04:002012-09-18T21:39:30.247-04:00Cardio UpdateSam had his usual every-3-month cardiology visit last Thursday. He was like an old pro - no fussing for the EKG, BP, Oxygen monitor, or Echo. Luke, however, nutted up so bad Chris had to leave early and take him home. I had been anticipating this appointment for the last month or so. While we don't notice BIG changes in Sam at home, it is becoming more and more obvious that he is just not keeping up with his classmates during physical activities. <br />
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Example: I took him to a birthday party that was at a gymnastics center. Every two minutes, Sam would sit, absolutely winded, and have to take a break. It was obvious he could not run as fast, as far, or do any large gross motor task with as much skill as his classmates. His teacher has been reporting to me that Sam needs more rest breaks, and gets tired even just playing inside the classroom. <br />
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At home, it is easy for us to modify our behavior and routine to fit Sam's energy levels. We don't take long walks without a stroller/ride on toy. When we walk into stores we walk S L O W, and then he rides in the basket. When he plays with our neighbors, he tends to hang back anyway since most of the kids are older and way faster. We carry him up the stairs even, or go super slow. But at school, they can't just slow down all the kids to keep up with him. They can't limit speed or intensity for the whole group just for him. <br />
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So the results of this most recent cardio visit did not surprise us: Based on Sam's oxygenation levels, which have steadily dropped over the last few cardio visits and are now down to 78%-80%, and on the reports of his increasing fatigue, we are getting close to having to make a decision regarding scheduling Sam's next heart surgery, the Fontan. Dr. Cardis wants to do this procedure BEFORE another medical crash like last time. He would also like to do it in the spring or summer of the year, giving Sam plenty of time OUTSIDE of cold and flu season to recover. <br />
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We were originally told Sam would need the Fontan at age two. Then, because of his wonderful health and a new school of research and thinking with regards to Hypoplastic Right Hearts, we were told Sam could be as old as 8 or 9 when he needs the Fontan. The problem is, that would mean severe activity restriction and 24/7 supplemental oxygen. Neither of those are (in our opinion) really appropriate. And, regardless of supplemental oxygen, if Sam starts to get oxygenation readings around 75%, it's time for surgery. Unfortunately for Sam, he is a tall, healthy kid. His size is contributing to his gradually decreasing oxygenation numbers. Meaning he has outgrown his original procedure and will need the Fontan sooner anyway.<br />
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Given all this, it appears that the spring/summer of 2013 may be most optimal for performing this procedure before Sam starts hitting even lower oxygenation numbers (which would make the procedure an emergency vs a controlled procedure). It would be outside of cold and flu season. It would also help bring up his energy levels before pre-K starts in August of 2013. Our plan for pre-K is for Sam to start at Springdale Elementary (our districted public school which is super high rated and all our neighbors love). I had wanted to schedule this surgery before Kindergarten anyway...it breaks my heart to think of him being so young and having to sit out of PE or recess or field day WITHOUT the surgery. <br />
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This is a tough decision either way. In theory, the longer we put off the Fontan, the longer we give Sam before he will need a transplant. And at the same time, Sam nearly DIED due to medically crashing waiting on his first open heart surgery. I fear waiting too long on this surgery, and causing another emergent situation. We also have to find a balance of allowing for limited endurance pre-surgery to buy 'life' time in the long term, vs letting him LIVE life NOW and experience all the things other kids his age get to experience. Dr. Cardis made it clear to us that Sam will likely NEVER be able to 'keep up' with his classmates. Best case scenario, his oxygenation levels will only rise to 90% after this surgery, which is still abnormally low and will cause poor endurance levels. <br />
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But I feel like we have to give him every opportunity we can to LIVE, and not just be ALIVE. If we are coming close to the Fontan based on medical cues we are seeing, then I would rather schedule the surgery for optimal recovery and optimal timing with regards to both cold and flu season and the start of pre-K, than open the door for a possible medical crash or decreased quality of life for Sam. <br />
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We return to the cardiologist in December, where we will have to make the final decision. Assuming the decision is made to go ahead with the Fontan in 2013, Sam will likely be scheduled for a pre-surgery heart cath (his third cath in his brief life) for the beginning of Spring, and surgery for the beginning of Summer. <br />
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I have dreaded this surgery for a number of reasons. For one...it's OPEN HEART SURGERY. Who WANTS to send their kid in to that. But the biggest reason is because no matter the outcome, this surgery is only 'palliative'. There is no 'curative' surgery for Sam. All they can do is perform a few procedures to make him more comfortable and increase his quality of life. And, unfortunately, the Fontan is the last foreseeable palliative procedure for his defect. When it fails, which it eventually will, the only option (that currently exists anyway) is transplant. Our great great hope is that Sam is solidly into adulthood when transplant becomes his next option, and that modern medicine continues to progress to allow a better option for him than transplant. <br />
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We have to be grateful for the amazing health of Sam thus far, and have faith that he will continue to be a 'best case scenario' with regards to his defect and outcomes. We also have to have faith that we are making the best decision for him that we can, and NOT LOOK BACK. Please pray for us in this process, and for Sam for understanding and patience. I look forward to 2013, and getting past this whole process and moving forward with our growing family into all the joys of pre-K and beyond. <br />
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Kathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com2tag:blogger.com,1999:blog-8159112532534507269.post-35340173092576283152012-08-23T19:15:00.000-04:002012-08-23T19:15:12.239-04:00Certified MALE CarrierWell, it appears I will be spending the rest of my days surrounded by gorgeous men...this new baby is another BOY! The OB had an ultrasound monitor that did not have a small screen for me to watch the ultrasound, but Chris was able to watch the whole thing. About 5 seconds into it, he got a big, dumb smile on his face and I knew right away he saw boy bits. When she did turn the screen to me it was quite clear what the baby is. BEST NEWS: full, four chamber heart and otherwise very healthy! <br />
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Sam has been saying that this baby is a 'sister' from day one. He has even argued with us that it HAS to be a girl. I was really nervous he would be devastated about another brother. SO Chris and I went to get him a small balloon bouquet before picking him up. He was so so so thrilled to get balloons, and I guess that excitement carried over when we told him they were from his NEW baby brother. He is settled on the idea of having two brothers now so I think all is well with him! Kathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com0tag:blogger.com,1999:blog-8159112532534507269.post-3423773895823258952012-07-30T21:11:00.003-04:002012-07-30T21:11:52.808-04:00No more curls!Little Luke's hair got to the point of being unmanageable. He had beautiful, loose curls all over his head. BUT they became a food trap, and in this heat if he even semi-sweated he looked like a grease ball. My mom came up for a week and kept the boys at home to spoil them rotten. One objective we had while she was here was to cut his hair. I had intended to bring him somewhere to have it done but between my mom, Chris, and me, we got it done! We put him in our swingset's baby seat and I chopped away. I saved a few curls for memory's sake. I think I did a pretty fair job!<br />
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My mom came up here on a fancy new bus system called the Megabus. It's a double decker bus that has really inexpensive ticket prices that runs along the east coast. She took Sam back to Mobile with her on the bus this past Saturday and left us with little Lukey. Sam was SUPER excited about the bus, and very happily jumped on the bus with barely a wave goodbye to us. He apparently yelled out "Here we go everyone" when the bus started moving! He's having a blast in Mobile, and Luke is having a blast being an only child. My mom, dad, sister, and Sam will be back here in Macon later this week and we will take a short trip to Gatlinburg. Sam starts back at his preschool next week and I KNOW it is going to be rough on him after having two full weeks of Nana's spoilage.<br />
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~KathyKathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com0tag:blogger.com,1999:blog-8159112532534507269.post-39875352123727960502012-06-19T20:48:00.002-04:002012-06-19T20:49:52.253-04:00I'm bad at blogging...and other life updates.So this is by far the longest I have gone without a good update. We've been busy, that's for sure. But I really have no excuse. So here, in brief, are the biggest updates.<br />
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1. Sam was teetering on the brink of needing the Fontan surgery now vs. waiting a bit longer. After some much better oxygen saturation numbers, we opted to wait. He had a 3 month check up today, and remains stable. He was SUCH a big boy, and not only bravely did everything he was asked, he did it by himself, without us holding his hand or motivating him in any way. Such a big boy. For now, we will just live 3 month visit to 3 month visit, and hold out on the Fontan as long as is safe. I am nearly certain he will have it done before Kindergarten (a full 2 years from now), as we want him to be able to fully participate in all of the activities his classmates will be doing (PE, field days, etc). But for now, we just love him for who he is, which is a pretty darn amazing, miraculous boy.<br />
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2. Sam's GI problems seem to be leaning towards a diagnosis of Celiac Disease. We are still waiting the results of a genetic blood test. I will update as soon as I know! I'd be fine with this diagnosis, but the kid only eats bread so I'm not too sure how we will work out the diet change!<br />
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3. Luke turned 1 year a few weeks ago. I just can't believe it. His baby-hood flew past. He is crawling like a mad man, pulling up, cruising sideways on the couch, and standing independently now. He will walk if you hold his hand, and I feel sure he will be walking by himself very soon. Physically he is 100% my clone. He has a handful of words and a few funny tunes that he has mastered. He babbles constantly. He bites (oops). He and Sam L O V E each other. Aside from recent back to back to back ear infections and some rough teething moments, he is a really good, really playful kid. I can't imagine Sam without him or him without Sam. <br />
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4. I had to leave my job at the pediatric clinic due to an unreliable patient census. With two kids now, we just need more steady income. I am back at the adult inpatient rehab clinic and things are going well. Except I miss those kids. I keep up with a few of my favorites still, and melt when I see any new photo of them. One will be heading to Atlanta in July for his open heart surgery, and I have great faith that not only will he fly through the surgery with ease, but that this surgery will make an enormous difference in his physical development. Say a prayer for this sweet one and his family!<br />
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5. I worked super hard from January until May and lost 20 pounds!<br />
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6. Then, I found out I was pregnant! Yes...number 3 will be here in early January! We were shocked but plenty happy. Sam is 95% sure it's a sister for him....we shall see. I had no pregnancy symptoms with the first two, and have had none with this one either. We will be going to Dr. Cardis around 25 weeks for a fetal echo, as the chance of having a child with a major heart defect does increase slightly vs the average person once you already have a child with a major heart defect. And my plan is to gain the least amount of weight as is safe, and I have my OB's blessing. So all my hard work to get skinny and healthy is not lost! <br />
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I'm sure there is much MUCH more that could have been updated over the last, oh...4 months or so. I'll try to do better! <br />
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~KathyKathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com5tag:blogger.com,1999:blog-8159112532534507269.post-75643696814673045462012-01-06T21:00:00.000-05:002012-01-06T21:00:32.137-05:00The Last Month Or So...Where to start... Ok here will be your order in case you need to jump around: 1) Medical Updates, 2) Pre-Christmas, 3) Christmas, 4) Post-Christmas, 5) Tummy Bug and ER Visit, 6) Disaster Return Trip to Macon<br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">1) Medical Updates: Luke had his circ and defect repair the first week of December. I think we were more affected than he was. Within a day he was back to his normal self, although diaper changes were a challenge for a while. We went back to Atlanta today for a check up - he had some scar tissue adhesions that the doctor addressed in office (tears were shed briefly) and we will have to go back one more visit to be sure the adhesions don't return. SOOOO CLOSE to closing the door on one of our medical dramas from 2011.</div><br />
2) Sam understood 'Christmas' this year...he understood Santa was coming and would bring presents if he was good, loved the tree and lights, and knew the wrapped presents under the tree were not to be opened until he had the OK on Christmas morning. It was fun to watch him get excited (or scared) when he would see Santa. We went to a neighborhood Santa Breakfast where we got our best "Santa" photo of our several Santa meetings this year. We went to our annual Christmas Party with Kids at Heart, the support group for children and families of children who have had heart surgery at Egleston. Sam got to see his heart friend, Emery, and made some yummy cookies (the highlight for him). <br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">3) Christmas: We drove to Mobile for Christmas this year. Sam had started to become obsessed with the presents under the tree. You could tell it was driving him crazy to know he had so many he would get to open. He would just sit under my parents tree and move the boxes around, and call out which box was for which person. Chris and I went our for a run Christmas eve morning, and I somehow stepped wrong and sprained my ankle, right along Cottagehill Road in full view of a million cars driving by. I'm still limping. We went to Christmas eve mass at St. Pius with Fr. Savoie, who was very influential to Chris and I during grade school and high school. He called all the kids up to the alter during the Homily to read the story of Christmas...Sam ALMOST went, but then got shy when all the other kids got up there and came running back to us. Christmas morning, Sam was so focused on opening his presents, that he didn't exactly react to the Santa presents that were sitting unwrapped under the tree. He did his stereotypical Sam thing, and got upset that the arm chairs had been moved (to make room for Santa gifts)...ever the OCD kid. He he had a FANTASTIC Christmas...between Santa's gracious gifts (including a power wheel and bike), opening presents at my parents house, then having a second Christmas morning at Uncle Will and Aunt Bradley's house, then having a THIRD Christmas morning at Yaya and Pops house...trust me he enjoyed himself. Luke had a blast too! I can't wait until they are both jumping at the crack of dawn to get under the tree!</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb1uFaa5jXjYDb-MTiszupiLdltMmhPZh7LQOf4gxSPLTK6QmS5qf0OpeYagPQip8TM-Cw7g-GnvODwwWNvHTzhX665XGXfWeldPUWiKYnLsDwEBkOcFN2Sh5FpErkyzc8GTLk1p3t1tk/s1600/DSC_1405.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="228" rea="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb1uFaa5jXjYDb-MTiszupiLdltMmhPZh7LQOf4gxSPLTK6QmS5qf0OpeYagPQip8TM-Cw7g-GnvODwwWNvHTzhX665XGXfWeldPUWiKYnLsDwEBkOcFN2Sh5FpErkyzc8GTLk1p3t1tk/s320/DSC_1405.JPG" width="320" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">5) Tummy Bug and ER visit: Unfortunately there was another little treat for us that morning...Luke was throwing up. At first I didn't think much of it...he just seemed to be gagging on spit. But then he threw up a whole bottle. Later in the day, Sam started throwing up. While Luke got better fast, Sam did not. By 6 pm, Sam was pale and lethargic. I went to wake him up from a nap to check on him and he was white as a sheet, with his eyes half open/ half closed. At first I thought he was looking at me, then I realized he was not. My heart stopped, as I honestly considered he might not be with me. I know that might seem irrational, but keep in mind what would be improbable for most holds a higher probability for us due to his condition. I immediately jumped on top of him, and he very slowly opened his eyes. We took him to the ER to get him checked out. His oxygen levels were quite low (74-76). The doctor said it was due to dehydration, so Sam got an antinausea pill and several glasses of water. Thankfully he was able to keep those down, and within a few hours of getting to the ER, he seemed much better (although very tired). His oxygen when we left the ER was where it was at our last cardiology appointment...79-80. A sad reminder to me that surgery is lurking ever closer. Sam slept great that night and woke up a little weak but happy the next morning.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">6) Disaster Trip Home: We had accumulated so much stuff over Christmas that we had to take my parents trailer home. We loaded up and said some sad goodbyes. Sam was ready to go home though, and was pretty happy to get in the car. About 13 miles outside of Mobile, we blew a tire in the trailer! Chris got a 2 ton car jack for Christmas, and got to give it a try on the side of I-10! My parents had to come meet us to give us a correct sized trailer spare. Sam got a few more minutes of being spoiled. By the time we got going and finally got home, it was late. Kids went to bed fine, but the trip messed up our schedule. It was a rough start to the next day. It didn't help that Sam got moved up to the next classroom and had to start with a new teacher. He LOVES his old teacher and old classroom, and ol' OCD Sam had a very difficult time switching to the new. He is used to the change now, and very happy with his new classroom which has LOTS of new toys! But our disaster last few days in Mobile still linger...the tummy bug hit ME yesterday and has had me down through today! </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Ok...I know that was pretty disjointed, but that should catch you up through today. One of my many resolutions is to keep this updated better through 2012! One last happy thought: I have a very good friend who just adopted their first baby. They will make amazing parents, and have fought through some adversity to get a hold of their beautiful girl. I also have another good friend who just recently announced they are expecting their first baby. They, too, are an amazing Christian couple, who have suffered the pain of miscarriage. Both couples so much deserve children, and I am so happy for them. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">~Kathy </div>Kathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com1tag:blogger.com,1999:blog-8159112532534507269.post-73176294764099611762011-12-06T21:00:00.000-05:002011-12-06T21:00:22.613-05:003rd Birthday and Continued Medical DramasI swear, between Sam and Luke, our insurance is probably freakin' out over all the medical junk they have had to shell out cash for recently. Long story short: Sam has his normal cardiac stuff, then heart cath, ENT stuff with a new set of tubes, and new GI issues that are now sending us up to Atlanta. Luke had a fall at daycare that resulted in a skull fracture with subsequent visits to the ER and Atlanta neurology, and just had his 'hypospadias' repair with upcoming follow-up in Atlanta, not to mention he just got his first ear infection. GUH! By the end of the year, we will have seen specialists in cardiology, gastroenterology, neurology, urology, audiology, and otolaryngology...all of those in Atlanta. I'm not complaining about the Atlanta thing though...we would be fools to think anyone in Macon could come close to being as good as those doctors and that facility.<br />
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I will return to the medical dramas in a minute. First, this past Saturday was Sam's THIRD BIRTHDAY!! What a milestone. We decided to mark the occasion with a birthday party in our back yard. We didn't want to drop a ton of cash, so we put together a 'homemade' idea. We took medium sized boxes and put them together and painted them to look like cars. Sam and his neighborhood buddies decorated them and had a blast running around the back yard. We had a blast hanging out with the neighbors. Poor Sam got super fatigued after running around for an hour or so, and actually ended up taking a nap on our bed (he has ALWAYS refused sleeping in our bed up to this point) mid party. But he was revived and we turned the birthday party into a SEC championship game watching party. It was really a great day, and Sam thoroughly enjoyed getting attention and presents! <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaBTqhzV8autSPjEBbAqgFv8DLAt9Gc1JCM04IxJeA2QRT1cvYVsFPEB-LUCyf5_rYvNFtKfdNvmj6GAEpP2I0pXSWhn-UHZ9DxiIFK2EtK_As7XLNWT4Rmu5XwnA2m-VRwGqR9cP70D8/s1600/DSC_1254.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" mda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaBTqhzV8autSPjEBbAqgFv8DLAt9Gc1JCM04IxJeA2QRT1cvYVsFPEB-LUCyf5_rYvNFtKfdNvmj6GAEpP2I0pXSWhn-UHZ9DxiIFK2EtK_As7XLNWT4Rmu5XwnA2m-VRwGqR9cP70D8/s400/DSC_1254.JPG" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1gzynpozZrrCAEY3fbTP1VhM8-gDQeseDXd3euqv6H3k2A_ZC7x7q3IAuPLq8l5_30Rz3sVTYrcN0tJiVGZqykWWHnyaQMNX40L1PfKa4B4A_rfXgSmYhd3Zx3ltBbDrbPm5I-YTZgic/s1600/DSC_1200.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" mda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1gzynpozZrrCAEY3fbTP1VhM8-gDQeseDXd3euqv6H3k2A_ZC7x7q3IAuPLq8l5_30Rz3sVTYrcN0tJiVGZqykWWHnyaQMNX40L1PfKa4B4A_rfXgSmYhd3Zx3ltBbDrbPm5I-YTZgic/s400/DSC_1200.JPG" width="267" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBuDaF4CjggxIehJqulegpCOMnRzlM5WTm-Aj-Z5FKm1t6kzYErBgXTtBwoAnz4fjkTefvNiQry87VzLKc_BKRfIdjUwsm-RqrrJPgEx49prgkjTcVNjwEvAGikGKkzO2BOwMiX1GFWAU/s1600/DSC_1214.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" mda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBuDaF4CjggxIehJqulegpCOMnRzlM5WTm-Aj-Z5FKm1t6kzYErBgXTtBwoAnz4fjkTefvNiQry87VzLKc_BKRfIdjUwsm-RqrrJPgEx49prgkjTcVNjwEvAGikGKkzO2BOwMiX1GFWAU/s400/DSC_1214.JPG" width="267" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">The day before the party, Sam had his normal 3 month cardiology follow up. While his doctor was clearly very pleased with the results of his heart cath, Sam's oxygen levels were lower than normal (around 79-80). Dr. Cardis feels we may be headed into the Fontan surgery sooner than later. He wants us to consider April of this upcoming year. Sam's most recent heart cath would still be 'valid' and we wouldn't have to do another. Also, it would be after cold and flu season. I just wanted to go longer. I had given up hope for the longest prediction we were given, which was age 9. But I was hoping for Kindergarten or 1st grade age. Not 3 years old. But, I don't want to wait too long and get in trouble either. I definitely do not want to crash land into this surgery the way we crash landed into the last one. And when Sam ended up begging for a nap mid birthday party, it became very apparent to me that April may have to be the time. We will see what his oxygen levels look like in March and make a decision then.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Little Luke had his urological repair yesterday. It was a simple surgery, but a compounding cold (and hard to find veins) kept us in the hospital most of the day. Poor little guy got brought back to me from surgery with a nasal cannula and on 2L of oxygen. The doctors were worried because his oxygen saturations were around 93...I had to chuckle a little...Sam has NEVER seen 93...93 sounds like a blessing from God to me! Luke took a while to recover from the medicines, but has basically acted like nothing happened to him at all. I have to take the bandage off tomorrow though, which should be fun. He's so sweet and carefree, I hate to see him in distress at all. But he (and Sam) is a trooper, and I am amazed at what he has gone thorough in his short life with a smile on his face!</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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~KathyKathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com3tag:blogger.com,1999:blog-8159112532534507269.post-25418109387920339362011-10-16T21:07:00.000-04:002011-10-16T21:07:07.936-04:00Cath Master!<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">So Sam had his heart cath on Friday. It went far better than expected! </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj95mMwyagkRZiX-rrb5NkGxjwIZSMIiaHquO9uiwGJbBEu-BOV85BX6uixqITVeGSn_1cLzzTfBwD0QWSa177hilpP5z6SeXedj4gv6noBj9_F7Mt4A6p97js5nwGSQZAoRfY-UOaw-Lk/s1600/DSC_0439.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" oda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj95mMwyagkRZiX-rrb5NkGxjwIZSMIiaHquO9uiwGJbBEu-BOV85BX6uixqITVeGSn_1cLzzTfBwD0QWSa177hilpP5z6SeXedj4gv6noBj9_F7Mt4A6p97js5nwGSQZAoRfY-UOaw-Lk/s400/DSC_0439.JPG" width="267" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">We stayed the night in Atlanta at the Georgia Power House (like Ronald McDonald House). We had left Sam in Macon with Chris's parents, and surprisingly, Sam wasn't too sad about leaving them all behind for a car ride with Mommy and Daddy to go visit "Sam's hospital." We got up early and checked in at Egleston. Sam was pretty happy and wasn't too suspicious. The cath lab set us up with a room, got Sam a hospital gown (and a stuffed animal to keep). We had to wait a bit as there was one case before Sam's. When the nurse came with the Verced to make Sam sleepy, things started getting rough. He wouldn't take the medicine, and it had to basically be forced down his throat by the nurses. He was upset about it, and was crying, and then started gagging. Now, I just KNEW he wouldn't throw up, since he hadn't eaten anything since late late the night before (surgical precautions, and all). But suddenly he vomited a whole kidney bean shaped basin of chunky food....from LUNCH the day before!! OBVIOUSLY our GI issues did not end with that last barium study, and I have a feeling our GI will be doing a scope after hearing about this. </div><br />
After the Verced kicked in, Sam was reasonably content, though he didn't want to see those nurses again! When it came time to take Sam back to the cath lab, he did NOT want to go with the nurse. They graciously allowed Chris to carry him to the lab table. Sam was silly happy by then, and happily allowed the anesthesiologist to place the gas mask on his face. Chris said he went to sleep while having a tickle fight with one of the nurses...adorable. Chris and I went down to the cafeteria and had breakfast and a coffee. We were touring the hospital and reminiscing about our stay during Sam's surgery. Suddenly, we got a cell phone call saying Sam was all done and the doctor was ready to talk to us!! Good or bad?!?!<br />
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We quickly ran upstairs and met the doctor. He said everything looked much MUCH more stable upon cath exploration than can be seen during an echo. While he did have some narrowing of his pulmonary artery, it actually was more of a 'kink' in the artery, and the pressure on either side was perfect and equal. And as far as the collateral arteries go, there was only one that would have required coiling (though he has many others that aren't necessarily a danger). That particular one, however, was super small, and he said it wasn't worth the effort. He expects it to grow slow, and not cause us any problems in the near future. Since we didn't have to do either an artery ballooning or a collateral artery coiling, we would get to go home as soon as Sam recovered from the anesthesia! <br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">The best news all day was that the doctor feels that with as stable as Sam seems to be, we can continue to hold off on his next open heart surgery! He felt we could probably last as long as 2-3 more years (to age 4-5). Sounds great to us!! </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDAMJ32GxvKY500J6xL0V5q5dSgaZZGo-QqfNPjJqfzQHh-826yxbrJ1IELlMJ_cHod9htaYzgjdcYM4OJQi1Lh2K_bYciHf5fwwWHveMkW_4gQFF-MldwlZE5TLznNFx6S2TyUAYqi0Y/s1600/DSC_0443.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="267" oda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDAMJ32GxvKY500J6xL0V5q5dSgaZZGo-QqfNPjJqfzQHh-826yxbrJ1IELlMJ_cHod9htaYzgjdcYM4OJQi1Lh2K_bYciHf5fwwWHveMkW_4gQFF-MldwlZE5TLznNFx6S2TyUAYqi0Y/s400/DSC_0443.JPG" width="400" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Sam returned to our room, not too happy but not as bad as recover from his ear tubes. He didn't want the nurses around, so when they needed to do an Echo, he wasn't thrilled about being touched by the Echo tech. He eventually settled down by being put in his hospital bed and having Mommy laid up in the bed next to him watching Yo Gabba Gabba videos on Mommy's phone. Within an hour or so, we were being discharged!</div><br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">We came home and relaxed with Chris's parents. The next day I had to remove his bandages (they went in for the cath in his neck and groin). They used big strips of tegaderm, and Sam fought like hell as clearly having the bandaged removed hurt. We'll have to request a 'Bandage Change' bead for that one...Ya Ya will need to get one too, as she had to hold Sam down while I worked on the bandage. I'm pretty sure she's got some bruises! Speaking of beads, Sam earned 3 more "Beads of Courage" beads...an IV bead, a Cath bead, and an Echo bead (which is the coolest one, because it glows in the dark). </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">To cap the weekend off, we went to the Georgia State Fair. We didn't stay long...just long enough to see the cows, pigs, horses, and the wild animal petting zoo complete with giraffe and zebra. Sam got to ride a pony, which was the highlight of his weekend I think! </div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzVSpmV6VPrh3FND_DFKs2nOApGkFPdyO8LPYmWwXHwTKk17BbRvJ_goRvp0z7bm8nkj2hV4U4_zfaFM3tWrJ4p3tIVykPc7wqNB8URNqoiNnq1cLqr1_o2ND_Od9ICiDB6EkPoLu1MeU/s1600/DSC_0480.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="267" oda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzVSpmV6VPrh3FND_DFKs2nOApGkFPdyO8LPYmWwXHwTKk17BbRvJ_goRvp0z7bm8nkj2hV4U4_zfaFM3tWrJ4p3tIVykPc7wqNB8URNqoiNnq1cLqr1_o2ND_Od9ICiDB6EkPoLu1MeU/s400/DSC_0480.JPG" width="400" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">We couldn't be happier with the results of the Cath. It was completely unexpected to not have to go through some interventions and have to stay the night...and we feel so blessed. Sam has really been nothing but a miracle when it comes to all of his major heart events. Looking at it all in hindsight, it seems so guided and planned. I just get the overwhelming sense that this is all meant to be. Sam is meant to be. Just the way he is. And he is meant to be here. And he will be here for a long time. </div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div>Kathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com2tag:blogger.com,1999:blog-8159112532534507269.post-9428204727913254832011-10-12T19:54:00.000-04:002011-10-12T19:54:03.339-04:00Beads of CourageSam has officially gotten his <a href="http://www.beadsofcourage.org/">Beads of Courage</a> bead collection started. If you haven't heard of this organization, please check out their web site. If your child or someone you know might qualify, check the list to see if their hospital participates. To date, Sam has 129 beads, each representing a cardiac treatment, doctor visit, or event. He will earn several more this Friday, when we go to Atlanta for his second heart cath. We have started his journal, which will help him remember what each bead represents so he can know just how much he has been through. This is what we wrote on the first page of his journal.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio73P4GH2CerhpV_CUniHnRMrZDpz4pbzcJILAzZfXE5vEUidAEqMnDB0quy5oHUViyqExzQyga2RG8fPKVMwMGw1q71ldp85IzLyAZ9pNmQYu3DSDodPqlEN8FpQev2YLJ54XEPYFkV8/s1600/DSC_0226.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" oda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio73P4GH2CerhpV_CUniHnRMrZDpz4pbzcJILAzZfXE5vEUidAEqMnDB0quy5oHUViyqExzQyga2RG8fPKVMwMGw1q71ldp85IzLyAZ9pNmQYu3DSDodPqlEN8FpQev2YLJ54XEPYFkV8/s400/DSC_0226.JPG" width="266" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: left;">When I first heard about the Beads of Courage program, I thought it was a truly genius idea. Complex medical conditions that affect a child and require lots of treatment are difficult enough for adults to understand. How can anyone expect a child to fully comprehend such a condition, its consequences for their own life, and its consequences for their family? Often times our instinct is to forget our ‘bad’ experiences in life. But you can’t just forget what you have to live with everyday. These conditions just become part of your existence and your personality, whether you want them to or not. How should a family turn the ‘bad’ of that type of condition into ‘good’, and help their child accept and embrace what simply cannot be changed?</div><br />
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That’s the real genius behind Beads. Giving a child a bead that signifies each event of treatment can turn an event that is unexplainable, painful, or scary into something that can be counted, and showed off as unique and special. It can provide a physical history of treatment, but in a language more appealing to children.<br />
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When Beads of Courage came to Children’s Healthcare of Atlanta, you had already been through two years of treatment. I sat down with the Bead tally sheet and our baby journal for you, and started to tally up your treatment history. I was saddened and joyful at the same time to discover you had earned 129 beads in your first 2 years of life! I was sad because it reminded me of all the things you had been through as a baby, and how unfair it is that any baby should suffer. But it made me joyful to think of what you have overcome, and reminded me that if you have survived these trials, surly you were meant for great things.<br />
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Tonight, I am starting your journal for your beads. I want you to be able to not only know you survived a particular treatment, but the story behind each one. Each bead and story should serve as a testament to your own strength, the love and support that surrounds you from your family and friends, and the blessing of top notch medical care that has brought you this far. I can’t wait for the day that you can physically help me write the story of each bead in this journal, and then one day take over writing this journal yourself. <br />
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I hope that these beads bring you a sense of accomplishment. I hope that you look at them and feel pride and strength over what you have experienced. I hope you take the beads with you to show-and-tell, write an essay about them in English class, carry them with you to college, display them in your first apartment, share the stories about them from your journal with your wife, and count each one with your children. <br />
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Don’t look at these beads and feel sad or cheated. Yes, these beads also symbolize a condition that may have severe consequences for your life span. Yes, these beads may represent pain and suffering. But you must remember that nothing is promised to us in this life. We were never told we would not suffer. We were never promised perfect health and happiness IN THIS LIFE. A person who is born perfectly whole and healthy could find themselves in a more dire situation than yours in a moments time. <br />
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Everyone carries a unique cross through life. These beads define yours. Always remember that this cross was chosen for you, and just for you. You have to make the most of your cross, turning the sad and unfortunate into something grand. Our cross is to have to watch our first born suffer, but raise him to overcome and strive for greatness anyway. I hope we succeed.Kathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com1tag:blogger.com,1999:blog-8159112532534507269.post-84726944688616849822011-09-29T20:24:00.000-04:002011-09-29T20:24:16.349-04:00Medical UpdatesWe have had (or are in the middle of) a month of medical crazyness with the boys.<br />
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Sam had his tubes surgery last weekend in Atlanta. We did preop at Egleston and then went to the Atlanta Aquarium. Sam had a great time, although by the time we had been there an hour or so he was spent. We stayed the night at a facility run by Georgia Power. It is a house for employees of GA Power who have to stay in Atlanta for medical procedures - like Ronald McDonald House. We woke up bright and early the next day for Sam's tubes. He was NOT a fan of putting on a hospital ID bracelet, and NOT a fan of putting on the gown. But he was flying high after getting some Versed. The surgery went fine, and Sam was brought back to us flying higher than when he left. He was loopy, and agitated. He puked a few times, which I thought was a bad omen for the rest of the day. We loaded him in the car carefully (he still needed total assistance to keep his balance), but sleeping on the ride home and then taking a nap when he got home helped tremendously. He apparently didn't have that bad of a time (or at least he has already totally forgotten) because he asked to go BACK to the doctor the next day!<br />
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And back he went. We had our GI appointment in Macon this past Tuesday. The GI feels that Sam's vomiting is highly unusual, and the fact that he throws up OLD food is highly unusual. We are being sent for an Upper GI Series next week (Barium milk-shake and xrays) to look for any obvious anomalies. If that isn't satisfactory, we will be going for a sedated scope...sigh. Anything with sedation is a risk with Sam, so I'm sure it will be in Atlanta if we have to do it.<br />
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In the mean time, lil' Luke came down with a rough cold. Then he started drooling a ton as he is already getting some teeth moving through his gums. Combined, they caused one cranky baby. He got sent home from daycare on Monday due to loose stools (surely the snot and drool he's been swallowing). So Luke got a trip to the Pediatrician for himself on Tuesday - of course all is fine. He went back to daycare and has been fine ever since.<br />
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BUT he will be going to the Urologist tomorrow to see what (if anything) needs to be done for his hypospadias. It will be just me and Luke headed to Atlanta for that, so I'm planning a little trip to Ikea for us both...you know, to de-stress from all these medical things!<br />
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Our last and biggest medical event is Sam's heart cath, which will be October 14. It can't come soon enough. Sam is certainly getting out of breath quicker, although he doesn't seem to care or notice. Kathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com1tag:blogger.com,1999:blog-8159112532534507269.post-79361448780359982312011-09-20T21:10:00.000-04:002011-09-20T21:10:01.177-04:00Baptism and Appointments ListWe headed to Mobile for Luke's Baptism this past Friday. We got to go to a Mcgill (our high school) football game and see my brother-in-law in the marching band. We got to watch our oldest nephew's soccer game, shop, and went to TWO frozen yogurt bars in one day. Luke's Baptism was sweet. One of our favorite priests, who has known Chris and I since seventh grade, performed the sacrament. Luke, who is so big he was literally busting the snaps on his little outfit, had no problem with the water being poured over his lil' noggin! We had a family gathering afterward at Wentzl's, who set aside a whole room just for us. It was really lovely. A few pics below. John (my brother) is the Godfather and Lydia (Chris's sister) is the Godmother.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKYPL94HOMDGvvQtKxNvwYxaWWc3Vr6T8S-FMhggOFYwY-ge68jyma64ZfmrKiTXmZ1qDGKpcnv-QJYeVc1Q9SH6SmqioTAAz3TPlk2g9y49ynOjbN9W5dVFGewUj7KcM_Qjpc-48V2GQ/s1600/DSC_0777.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" rba="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKYPL94HOMDGvvQtKxNvwYxaWWc3Vr6T8S-FMhggOFYwY-ge68jyma64ZfmrKiTXmZ1qDGKpcnv-QJYeVc1Q9SH6SmqioTAAz3TPlk2g9y49ynOjbN9W5dVFGewUj7KcM_Qjpc-48V2GQ/s320/DSC_0777.JPG" width="213" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYS9z5BDSLCrG0kgvTjYsD5GPe_Qphv6UU0wPSIKlxkBiBcvZ2KSNLq0ZRuMWI1r9ucXaRN9bIjRxidY9TuymY_sTXOxeop4ASNVvNuaIt9t4nYkXW1wTc7H6V-oDiozEzY_6eL2xF6Gw/s1600/DSC_0793.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" rba="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYS9z5BDSLCrG0kgvTjYsD5GPe_Qphv6UU0wPSIKlxkBiBcvZ2KSNLq0ZRuMWI1r9ucXaRN9bIjRxidY9TuymY_sTXOxeop4ASNVvNuaIt9t4nYkXW1wTc7H6V-oDiozEzY_6eL2xF6Gw/s320/DSC_0793.JPG" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEistfbdkVWU_G77DuMm3OjgR-0nlkhnjxcnqHp_kSlbXTJ-F3_3RvF93Z7izvpqEZYDMyoB5cVnQU1krjvXMIIw1HCYqznVIeWBfcJWZShe_CJ21sfkVVpwAgLEbdNSWI2H0tjwVAfILks/s1600/DSC_0803.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" rba="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEistfbdkVWU_G77DuMm3OjgR-0nlkhnjxcnqHp_kSlbXTJ-F3_3RvF93Z7izvpqEZYDMyoB5cVnQU1krjvXMIIw1HCYqznVIeWBfcJWZShe_CJ21sfkVVpwAgLEbdNSWI2H0tjwVAfILks/s320/DSC_0803.JPG" width="320" /></a></div>Up next: about 300 doctor appointments. It all starts Thursday with preop for Sam's tubes, then tubes on Friday (all in Atlanta at Egleston). Next week: GI for Sam in Macon, Urology for Luke in Atlanta. Week after: Pediatrician check up for Luke. Sometime (still pending scheduling) in the next two weeks: heart cath for Sam in Atlanta.<br />
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Two prayer requests: Say a prayer of thanksgiving and of health for Chris's cousin Josh and his wife Kimberly, who are 11 weeks into a miracle pregnancy! Say a prayer of peace for two heart families we know who have tragically said goodbye to their babies this week.<br />
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~KathyKathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com1tag:blogger.com,1999:blog-8159112532534507269.post-79962093187585105882011-09-15T20:22:00.000-04:002011-09-15T20:22:00.457-04:00Sad Day at the CardiologistWell, I guess we were bound to get here, one way or the other. Just was hoping to hold off longer. Our Cardiologist wants to do a heart cath in the next few weeks. <br />
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We (Sam and I) went for Sam's regular 3 month Cardio visit today. Chris is out of town and I was able to drop Luke at daycare before the visit. Sam was SO good. I can't even emphasize that enough. He had a few moments of high anxiety, but by the time his Echo rolled around, he was laid up on the Echo table, lights off, Toy Story on the TV, sucker in one hand, and other hand relaxed behind his head like he was on the beach. He weights 36lbs and is 41.5 inches tall....whoa! Where did my baby go!<br />
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Before the Echo, I talked to our Cardio about Sam's increasing shortness of breath. He really can't play too long before he gets winded. This wouldn't be a huge deal (I mean, this is what is expected for his condition), except that recently he will vomit when he gets winded. Now, if you know Sam, you know he vomits A L L THE T I M E. He's a gagger...it's just what he does. But the vomiting just when winded is a fairly new development. Cardio is going to send a referral to GI, just to check it all out. He doesn't THINK it's heart related, which is good. But, I could already tell his gears were starting to turn when we were talking, and he told me he wanted to see the Echo results before he said anything else.<br />
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After the Echo, he said he saw a narrowing in the left branch of the pulmonary artery (the vessel that carries blood from the heart to the lung). It's not necessarily related to Sam's list of pre-existing defects, but it's there now when it wasn't there before. He thinks this narrowing is causing decreased blood flow to the left lung, and increased blood flow to the right. He thinks the lop-sidedness might be causing the out of breath moments. He thinks we need to go in asap via a cath and open up the narrowing (ballooning and maybe stint). While we are there, he is going to have them 'coil off' (close up) the colatteral vessels that are forming. More of those have formed since last time too, which might contribute to shortness of breath. He hopes that by doing these things, we can hold off the Fontan (Sam's next open heart surgery) a bit more. Unfortunately, it doesn't sound like we are going to make it to the age of 10 like our last guesstimate stated. I didn't think we would make it that far anyway, but hoped we would making a little further than this. He said depending on what the heart cath finds, we may be in for the Fontan surgery as early as next Summer. We'll just have to see what they find and how much the coiling and ballooning help.<br />
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He also started Sam back on Lisinopril (blood pressure med), as it is becoming protocol for Sibley Heart Center to put post-Glenn (Sam's first surgery) kids on Asprin and Lisinopril to help heart function. He said that after the Fontan, they will add a third medication that will help heart function and decrease scar formation. He said all 3 will be life long. I hate that. But whatever it takes, right?<br />
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Sam was just officially signed up for a program at CHOA-Sibley called <a href="http://www.beadsofcourage.org/index.html">Beads of Courage</a>. It is a part of their child-life department, and helps kids take ownership of their medical condition by 'rewarding' medical experiences with a hand-made bead, and then encouraging the family to help the child journal their experience. This is a new program at CHOA. But they are going to 'back-pay' Sam all the Beads he has earned since birth...over 100 when we did the tally! My job will be to string them and start a journal for him for each bead on the string from birth to the present. I hope that from the present and into the future, he will be able to help me collect, strand, and journal each bead he earns. He may not be quite old enough, but maybe this upcoming cath will be a great chance for him to not just add to his bead strand, but start to understand exactly how much he has been through and how special he is. When we have the beads, which are currently in the mail, I'll be sure to get a photo of him and his strand!<br />
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It may have been a blow, but we are prepared. I'm anxious to see if the cath helps Sam's tolerance for physical activity, and to get a real estimate of how long until the Fontan surgery. It will be a rough few months for Sam, unfortunately! He has to go back for another set of tubes in his ears, thanks to chronic fluid that just refuses to stay away! Two procedures that need full anesthetic in just a few weeks time...I hate it for Sam and I hate it for Chris and I!!! <br />
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On a whole different note, little Luke is growing like a weed! He was 15 lbs at last check, and at 3 months old, he is filling out 6-9 month outfits! He has the BEST disposition, and hardly cries. He eats like every meal is his last, and sleeps like a champ. He is starting to giggle, and loves to talk. If he keeps being this good, he might earn himself a sister some day! Poor little Luke will be having his own journey up to Atlanta for a specialist appointment in the next month or so, as it is time to address his hypospadias. I'm thinking it might be worth mine and Chris's time to just buy a house next to Egleston hospital and move to Atlanta! I would LOVE to snag a pediatric therapy job there! <br />
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Tomorrow I will be driving Sam and Luke (and Relo) to Montgomery to pick up Chris from his business trip. We will then be headed to Mobile for Luke's baptism. I don't think the fun ever ends in our house!<br />
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~KathyKathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com2tag:blogger.com,1999:blog-8159112532534507269.post-90100511771816638572011-08-19T22:03:00.000-04:002011-08-19T22:03:05.625-04:00California, New School, and Birmingham...Oh My!!So it has been a very busy few weeks for us...when is it not? <br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">A few weeks ago, I flew to California with Sam, Luke, and my sister Amanda. We met up with my parents, and spent the week visiting my Dad's mother and siblings. I was VERY pleasantly surprised with how well both Sam and Luke did during the flight. We opted NOT to bring supplemental oxygen this time, since Sam has done so well without needing it on previous flights. He did great in the high altitudes too, with no obvious increase in cyanosis or his other cardiac symptoms. Sam truly enjoyed playing at my grandmother's mountain cabin, and loved my uncle's jacuzzi and his house's proximity to the beach! This was Sam's second trip to the Pacific, and he could have cared less how cold the water was, he was ready to dive in! Luke was an angel, and decided it was time to start sleeping 6-7 hours at a time! I hardly know what to do with a baby who sleeps! The flight back was a little more rough, although not altogether bad. Sam and Amanda sat together in a row in front of me. Luke and I were literally squeezed in between two obese men, which made breastfeeding not only impractical but impossible. Thank God I packed plenty of formula</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMdYrV7j3YljT6LU1Lvz-Vo53KPtIr94I5SqB_63cZljLTVhIpq7J3rLhRsRwGyPY1X8j-C1kzdKMJ6DGAQrg04uMKs-6jw8JTalJHLH4y7iB41xSmlaAT6f-n8-VAQedIApPdiP2-LMA/s1600/DSC_0543.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="267" qaa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMdYrV7j3YljT6LU1Lvz-Vo53KPtIr94I5SqB_63cZljLTVhIpq7J3rLhRsRwGyPY1X8j-C1kzdKMJ6DGAQrg04uMKs-6jw8JTalJHLH4y7iB41xSmlaAT6f-n8-VAQedIApPdiP2-LMA/s400/DSC_0543.JPG" width="400" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9CHS0J66G4gZTGyhg1DEc2w-tYIp042Vr36uv81WJW-cvII58xvp74NNMQncHR4D0lP-GgYf4kMHi5nKijXAyU98fC1zzBv6sulalJ3Cv6hAKf8Y7p-a67CRPqP2-oLIqKdIjLZwG7mc/s1600/DSC_0697.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="267" qaa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9CHS0J66G4gZTGyhg1DEc2w-tYIp042Vr36uv81WJW-cvII58xvp74NNMQncHR4D0lP-GgYf4kMHi5nKijXAyU98fC1zzBv6sulalJ3Cv6hAKf8Y7p-a67CRPqP2-oLIqKdIjLZwG7mc/s400/DSC_0697.JPG" width="400" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><img border="0" height="267" qaa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU3AwuDq9n4s5Bd4w8MT9UglcDEJcmm-XMq_qfSZNwOObdnI-HqurnqPhSN8Uttl5vG0Ew8zWsF_JGcDLnSf4W3Q3v7Fle_3Z_UeChZO4e_IuIWGuX6sQp7RqWjUMyRAyWB8ynXw1S-FM/s400/DSC_0652.JPG" width="400" /></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">The Monday we returned from California, Sam started at his new school. It was tragic. He hasn't been out of school more than few weeks since his birth. This summer, not only has he been out of school for 8 weeks straight, but he has had a truly eventful 8 weeks full of Nana's and Yaya's and aunts and cousins...who would want to go back to school after all of that?? But his new school is great, and his sweet teachers have been so good. I think they were totally baffled and freaked out when I informed them about his heart...I think they thought he might drop dead on them any second. After a few tense days though, Sam has gotten used to his new friends and teachers, and they have relaxed about him! He happily walked into his classroom today, and has spent everyday since the first day talking his head off about the new toys and new playground and new friends when I pick him up at the end of the day.</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">With Sam being out of the house, Luke and I have had some one on one bonding time...which really hasn't happened much since he was born. Luke is SUCH a laid back kid...NOTHING like baby Sam. Here's a photo from one of our recent busy days of doing nothing:</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRUZJJJG55TXT_gi0bv9rqCpMMCL_i1_BD_A6BTBEMULwE_BhjLhSUY3I0tljpK45kRMmIEBtMmVklGvIwHsU90wgkihyphenhyphenwORHnt4N9OzRrjm-PXhY-B2ACCLrXbL95RuQN_qb09o-IiCo/s1600/DSC_0760.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="267" qaa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRUZJJJG55TXT_gi0bv9rqCpMMCL_i1_BD_A6BTBEMULwE_BhjLhSUY3I0tljpK45kRMmIEBtMmVklGvIwHsU90wgkihyphenhyphenwORHnt4N9OzRrjm-PXhY-B2ACCLrXbL95RuQN_qb09o-IiCo/s400/DSC_0760.JPG" width="400" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">This past week, Chris had a business trip to Birmingham, Alabama. The whole family came with him, even the dog. We stayed at a nice little Embassy Suites. We had an eventful 32 hours, which included one room change at the hotel due to leaking sinks, Sam puking in the lobby AND in his bed (sinus drainage caused a cough which caused a gag which caused...well, you know Sam...), and a brave trip to the zoo! Which Chris was at work, I decided to take the kids out. It just so happened the zoo was RIGHT next to the hotel, and (bonus) it was half price admission day! Biggest problem: we didn't bring our stroller. Thankfully, the rental stroller at the zoo was just big enough to squeeze Luke in his car seat and Sam. (Note: stroller rental was NOT half price...) It was warm, but not humid - a real rarity these days. We thoroughly enjoyed our day. Sam has a short attention span still, but loved seeing the animals. I laughed out loud when he called the ostrich a dinosaur. His favorite exhibit, however, was a the 'kids zoo' that included a water play area. Luke, again, was an angel, and slept through most of the whole trip.</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAX0jYYTeacEEMoy8cTKeBWkgBDpuPXs_Ie_iUMvEsjdGFMghDboJNvpOo8kV_CwLgYVwJ3k6RCBKXzWypggVWADeq4xpBue7JKMsoLb9a7vb5XkzRU57rq1QKB8dhsyOW08fKHgiQgnE/s1600/DSC_0713.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" qaa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAX0jYYTeacEEMoy8cTKeBWkgBDpuPXs_Ie_iUMvEsjdGFMghDboJNvpOo8kV_CwLgYVwJ3k6RCBKXzWypggVWADeq4xpBue7JKMsoLb9a7vb5XkzRU57rq1QKB8dhsyOW08fKHgiQgnE/s400/DSC_0713.JPG" width="267" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_T31YSncJxgeegYz64d8obZvdpPBfNrOCn5-jVMSYb60m8sF2_YpZXs4nO8pLuKdka4xyahWTQipGWSNrfNyh46BNFR1b7xwYcQSrc-a_N-KXYzAV8g-tMvyS-ToI0PaUc0yhRCsWlBY/s1600/DSC_0714.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" qaa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_T31YSncJxgeegYz64d8obZvdpPBfNrOCn5-jVMSYb60m8sF2_YpZXs4nO8pLuKdka4xyahWTQipGWSNrfNyh46BNFR1b7xwYcQSrc-a_N-KXYzAV8g-tMvyS-ToI0PaUc0yhRCsWlBY/s400/DSC_0714.JPG" width="267" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ9Ql1KgWcUjremanIMgJbf4vBXKTaXZL4XRaNWVCauuWz3BUUOnLtkl5fCgf_f0UjWBUJF5Y4JT1YLCDQQdFvOHBZxEHBJ1ddOVe_lWkZNmLMVpEFKCk57fM4mQx6UDCcDgKrsRhM1b0/s1600/DSC_0717.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" qaa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ9Ql1KgWcUjremanIMgJbf4vBXKTaXZL4XRaNWVCauuWz3BUUOnLtkl5fCgf_f0UjWBUJF5Y4JT1YLCDQQdFvOHBZxEHBJ1ddOVe_lWkZNmLMVpEFKCk57fM4mQx6UDCcDgKrsRhM1b0/s400/DSC_0717.JPG" width="267" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">I have really enjoyed my maternity leave, though it has been extremely busy. I have rarely had a single day where I just got to relax with my babies. I don't know how, but the house seems to need more cleaning and more attention when me and the kids are home. I feel like I'm constantly cleaning. And I tend to get really bored in the house really quick. Even though I LOVE being at home with the kids, I am ready to go back to work. A) Sam's social nature and his super smarts have proven to me daycare is great of my kids development - I truly feel like he would be a different kid entirely if I had been a stay at home mom with him (and I don't mean in a good way). B) I am a terrible person and wife after being locked in the house all day. For my sanity and for Chris's, I need to be out and about. C) I have a whole caseload of developmentally disabled kids who need me back at work! For most of these kids, I'm their only option for PT. And I'm happy to get back to them and do what I do. </div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">I have one more week at home, then it's back to our old routine. I'm ready. But I'm going to live up this last week!</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">~Kathy</div>Kathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com2tag:blogger.com,1999:blog-8159112532534507269.post-44449332406879787852011-07-12T22:22:00.001-04:002011-07-12T22:23:34.370-04:00WHOA, Time Flew By!I CANNOT believe it has already been 5 weeks since Luke was born! We have some busy weeks following his arrival. My mom stayed in Macon after Luke was born to help me with Sam, since Chris went back to work after just a few days. Chris's mom came up about a week after Luke's birth. Both Moms and Sam left to go back to Mobile, and gave Chris and I a week to ourselves to get to know lil' man. After that week, Chris and I drove down to Mobile for a week of vacation. Luke got to meet the rest of our families, including all his aunts and uncles (minus Uncle Mark and Uncle John) and all his cousin's. We all came back to Macon and have spent the last week adjusting to being a family of 4. <br />
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Naturally, Sam returned to Macon SPOILED ROTTEN. After a full month of having my mom's full, undivided attention, he has had a tougher time adjusting to being home with ME verses having a new brother in the house! He doesn't interact with Luke much, but doesn't seem bothered by his presence, which is positive. <br />
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Luke is a natural sleeper. He goes down around 10-11pm, and sleeps 3-4 hour chunks of time, waking only to eat and then goes right back to sleep. I could make a list a mile long of the ways Luke has been different from Sam...sleeping and nursing rank REALLY HIGH on that list!<br />
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Enjoy a photo of our sweet little Luke dressed as Yoda, which was Chris's Father's Day present!<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC_R9bmKHCUGCry9bDxlm58tlu5yJHrS6oBJ5priulwWNRL9xrKJWd2vM9TKaTRHOs8258tXTcbpccjA0cihd3uiWSbFXSd6wenFKC9240EMtr6qUF4cBBuATSTgxPEVhJHwxaSA20U2c/s1600/DSC_0273.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="267" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC_R9bmKHCUGCry9bDxlm58tlu5yJHrS6oBJ5priulwWNRL9xrKJWd2vM9TKaTRHOs8258tXTcbpccjA0cihd3uiWSbFXSd6wenFKC9240EMtr6qUF4cBBuATSTgxPEVhJHwxaSA20U2c/s400/DSC_0273.JPG" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"></div>Kathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com1tag:blogger.com,1999:blog-8159112532534507269.post-82102642174882935712011-06-06T14:21:00.000-04:002011-06-06T14:21:44.033-04:00Welcome Luke Christian!SUCCESS! We delivered our sweet boy Luke Christian on Saturday afternoon.<br />
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I went into labor on Friday after finishing up my last day at work. Chris had to go out of town for business, so my parents had just arrived to help me with Sam while Chris was out. I woke up from a nap in pain but not overly hurting. My parents, Sam and I went out to eat for one last dinner, and I placed a call and got Chris to start heading home. I went into the hospital with my Mom around 8pm but got sent home around midnight due to poor progress. They gave me a sleeping pill, and told me to go home, take it, and relax. I was a little hesitant but man that sure did the trick!<br />
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I woke up about 4 hours later in for real labor pain. Chris was home by then, and he and I went back to the hospital around 6am. Things flowed very smooth after that. Got my room, got my epidural, and by 1130 we were pushing. I'm a championship pusher (all the nurses told me how awesome I was,especially considering the epidural) and he was born after just 3 contractions worth of pushes. Seems like there should be some kind of lapel pin or bracelet you should get to wear around for that kind of awesomeness. <br />
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Anyway, Luke Christian was 8lbs 8oz, 21 inches long. It was truly different getting to hold the baby immediately, keep him in the room with us after delivery, actually NURSE! I can list forever the things that are already so different about this birth compared to Sam and the heart experience. We even got to come home WITH HIM after 24 hours! We got home yesterday afternoon, and have been enjoying figuring out what to do with a true newborn for the first time...it's like being a first time parent. <br />
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He slept great in the hospital, but decided last night to stay awake AAALLLLLLL night long...and try to use me as a giant pacifier ALLLL night long. Sigh. But we are having a great time. My Mom stayed after the birth to help with big brother Sam, who is far more interested in having Nana around than Mommy, Daddy, and/or baby. He does like to look at him momentarily, but would really just prefer to go to another room with Nana to play. That's fine. As long as we aren't having meltdowns over the baby like I thought we would, Sam will be fine. <br />
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Say a prayer for us that this nursing thing keeps going well. We pumped for 4 months with Sam and it was tortuous. Also, Luke is not without a slight congenital defect. He has a mild urethral defect that went undetected until birth that will need a specialist's opinion, with a possible outpatient surgical correction. But we'll take that over a heart defect ANY DAY, and we feel confident all will be fine. We are happy; we are blessed.<br />
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~KathyKathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com5tag:blogger.com,1999:blog-8159112532534507269.post-42908723198704177152011-06-01T19:38:00.000-04:002011-06-01T19:38:02.958-04:00Can't Stay in there Forever!Yes...still pregnant. <br />
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But not for long! For one, I'm dialated to 3cm as of today. Two, this baby's getting evicted, whether he likes it or not, come Monday. Induction starts at 7am! <br />
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Chris just left town for 48 hours (he'll be 3.5 hours away). Think I'll go before he gets back?<br />
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Say a quick prayer for Cain, who just had his Fontan. Also for Alexis, who finally received her new heart after 8 long months in the hospital. Alexis's whole family needs special prayers, too, as they just received word that their unborn child will also have a severe CHD and will need multiple surgeries.<br />
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~KathyKathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com1tag:blogger.com,1999:blog-8159112532534507269.post-34321844539077635432011-05-15T21:43:00.000-04:002011-05-15T21:43:17.825-04:00Yeah, Still Pregnant.I'm pretty over being pregnant. Work is rough, as I'm either on the floor playing with kids, picking kids up, or holding kids using my whole body strength most of the day. I'm hungry but can't eat more than a little bit at a time, thanks to a baby taking up my entire abdomen. It's hot. And I mean HOT. My back hurts, I have no energy...blah blah blah...I'm just done.<br />
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Two weeks ago we had our 35 week ultrasound to check on the baby's position and size. I was a little sad we didn't get to see his face since he was turned around backward, and we didn't get a single photo as a souvenir. Baby boy was head down (which is good news), and was measuring at around 5 pounds 12 oz, which was a little big for his gestational age but that's how Sam was too. I go to the doctor every week now, which gives me something to look forward to. Most weeks are boring. Takes all of 5 minutes. <br />
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The most excitement we have had so far was last Thursday. I had actual contractions (painful) for about 3 hours that night. They never became regularly spaced, and slowly faded away. Sigh. It was a new experience for me though. With Sam, my water just broke...I wasn't having any contractions. The only contractions I got to experience were the ones brought on by a big bag of pitocen, and those contractions SUCKED. <br />
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As far as the rest of the family goes, Chris participated in a Warrior Dash in North Georgia this weekend - an off road race with a lot of obstacles. He had a good time, and Sam and I kept busy with our own adventures while he was gone. I took Sam to Monkey Joes - a kid's playplace with a bunch of blow up moon bounce type stuff. Sam was a little small for most of the stuff, but he had a blast just running around and watching other kids bounce and play. Parents are allowed to get in and help kids under 4 climb in the bouncers, but I didn't exactly want to go into labor at Monkey Joes. Today, we went to our neighbor's daughter's birthday party. They had a blow up moon bounce-like water slide. Once again, Sam was a little too small for it. It was a double slide, and they had once side with water and one without. Sam was content with me shoving him up to the top of the dry side, UNTIL he saw the kids in the water. But it was unusually cold today, and when the water would spray on him he would shy away. I shoved him half way up the wet side a few times and he would chicken out as soon as the water would start to hit him. Finally, one sweet little girl coaxed him the rest of the way to the top and slid down with him. Of course, when he hit the freezing pool of water at the bottom of the slide, it took his breath away and he started screaming! He recovered quickly, and moved on to throwing water balloons at his own feet. Needless to say, he went to sleep so easily tonight.<br />
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A few prayer requests: A heart friend from north Alabama is having a very rough time with their child, who has a very serious complication in addition to HRHS (Sam's defect). He is in the hospital awaiting their next move. Another heart friend from Daphne with HLHS (opposite but similar to Sam) just had his Glenn (Sam's surgery), and is recovering. And a prayer of thanksgiving for Amelia - niece of a friend of mine. She was born at 24 weeks gestation the Sam weekend as Sam's emergency surgery 2 years ago. She stayed in the hospital almost a full year, and has been struggling at times to reach milestones. However, in the last few months, she has really started to thrive, and their most recent victory is that they are starting to gain ground with getting her to oral feed vs her G-tube. It's been thrilling to hear her progress recently, and I've always been impressed with how well her parent's have persevered and helped her get to where she is today. <br />
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~KathyKathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com1tag:blogger.com,1999:blog-8159112532534507269.post-37808718092640897482011-05-04T21:30:00.000-04:002011-05-04T21:30:15.863-04:00Two Baby-Moons<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiytutSEmEl76X2LEtLhDYojLqMX_6owyYnKtiPwtOgfqVbcp9hEsxjiVMbYvXFETJy_o6dw1Qbb_i869VjlwCSFfbHq0p-Zn1TKiLbfSyJrWk2eq0mRoPSXjisgLKV_qyRsa7dCGHJ6y8/s1600/DSC_0142.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" j8="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiytutSEmEl76X2LEtLhDYojLqMX_6owyYnKtiPwtOgfqVbcp9hEsxjiVMbYvXFETJy_o6dw1Qbb_i869VjlwCSFfbHq0p-Zn1TKiLbfSyJrWk2eq0mRoPSXjisgLKV_qyRsa7dCGHJ6y8/s200/DSC_0142.JPG" width="133" /></a>Our little family was lucky enough to have the chance to escape our Macon, GA world for two vacations in a row these last few weeks.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8nc142gELHuzbC6mkW7kk4Q4LlAGbkEICyY3h-Oavb_pWgqpJsngFWi-d_4D8El4ddraXare7h1AK_WMag_tg52lFRHGOMW7n1rgPZS9RIbmuU4geNoiCK6RR-PJ-QhzjVrsjVxDd2Mk/s1600/DSC_0187.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" j8="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8nc142gELHuzbC6mkW7kk4Q4LlAGbkEICyY3h-Oavb_pWgqpJsngFWi-d_4D8El4ddraXare7h1AK_WMag_tg52lFRHGOMW7n1rgPZS9RIbmuU4geNoiCK6RR-PJ-QhzjVrsjVxDd2Mk/s320/DSC_0187.JPG" width="222" /></a>First we were blessed by our neighbors, who gave us a weekend at their Fripp Island beach house off the South Carolina coast. It's a private island, so the crowd was super small. This was Sam's first real beach experience, since the oil spill ruined our chances to hit up the gulf coast last summer. He had a freakin' blast. He saw the water on our first trip down to the beach, and saw all the kids running around without shoes and shirts, and immediately started stripping off clothes while running down the beach to the water. It was so much fun to see him explore and experience the sand and water. Our neighbor's beach house was awesome too, and Chris and I got in some good relaxation time.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">The next weekend we drove up to Gatlinburg, TN to my parent's cabin. We picked up my sister Amanda at the Atlanta airport on the way, and then met Chris's sister Shannon and her family up there. We did a waterfall hike, and Chris, Shannon, Mark and the boys did a bike ride through Cades Cove. I hope they enjoyed the break as much as we did. After Chris's sister and her family went back home, my parent's drove up for the Easter weekend. They picked up my brother along the way. I didn't think Sam would ever recover from a full week of seeing his cousins and being spoiled by family. I'm finally getting to that point in the pregnancy where I would rather sit than do anything else, so I hope I didn't ruin anyone else's time...but it was nice to have a full week in the mountains to just hang out with family.</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyfg3k8p6ZCg2YkuAn_gfeO6xRddLmpD2oKS_2Ygsh1exyAAm4o401AAaZyc4hsDfePr0Vu_bZSBgM91uyzAe-Jj8e3mv27hlqPbDXwb8miM5dX2XBsOgOIUmtSWxTOhEO-fC3qAGJlHs/s1600/DSC_0327.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" j8="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyfg3k8p6ZCg2YkuAn_gfeO6xRddLmpD2oKS_2Ygsh1exyAAm4o401AAaZyc4hsDfePr0Vu_bZSBgM91uyzAe-Jj8e3mv27hlqPbDXwb8miM5dX2XBsOgOIUmtSWxTOhEO-fC3qAGJlHs/s320/DSC_0327.JPG" width="320" /></a></div><br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Speaking of the pregnancy, me and baby are doing fine. I have had 2 nights of braxton-hix contractions, but I'm pretty sure it's because I can't lay off the sweet tea and caffeine. We had our 35 week ultrasound today. Everything went great! Lil' baby had his face hidden, so we didn't get to sneak a peak. But he is measuring a little a head of schedule, and weighing in a 5lbs 12 oz. We should finish the last little touch on the room Sam and brother will share this weekend. Now comes the list of last minute details: pack the hospital bag, bring down the bassinet, buy the last little bit of essentials including little tiny diapers. I'm ready. I'm done wondering how this will all go down....I'm ready to just get started!</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Kathy</div>Kathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com2tag:blogger.com,1999:blog-8159112532534507269.post-66064277148318480592011-04-06T22:20:00.000-04:002011-04-06T22:20:14.025-04:00HappeningsA glimpse into 24 hours of life with Sam...<br />
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We had a big thunderstorm the other night. Sam (who has rejected his white noise CD ever since we accidentally forgot to hit 'repeat' a few times, causing a very scary heart beat track to turn on and scare the crap out of him) freaked out with the first big thunder boom that came at about 1am. By the time I got to the top of the stairs, he had his glow worm in one hand and his blanket in the other and was getting out of bed to get the hell out of his room. He has not slept in our room since he was 4 months old, and he has not slept in our bed since before his surgery at 3 months. But what other option did I have? <br />
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I laid him down between Chris and I, and covered him up. He was really peaceful for about 5 min, and I even saw his eyes close a few times. But, once he realized he was in Mommy and Daddy's bed, he started to play with the covers and ask for the phone (as I'm so sure Nana or Yaya would have wanted a call at 1am). An hour later, once the thunder had calmed down, I told him "Alright, back to your car bed"...he protested and then pretended to close his eyes. Too little too late buddy. Naturally he had no problem going back to sleep, but getting up the next morning was rough.<br />
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For one, he didn't want to get up. Then he didn't want to get dressed. Then he definently didn't want to get in the car without getting to watch an episode of his beloved Yo Gabba Gabba. I coaxed him into the car with a 'cookie'....a breakfast cereal bar. He broke the bar in half by accident, and had a total melt down, asking me to 'fix it fix it'. It was tragic. <br />
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Feeling bad about the broken cookie and rough morning, I took him to get some fries (his fav) at a new Burger King near our house. Daddy was out playing Ultimate Frizbee with his buddies, so it was a Momma and Sam date night. There is a huge play house in this BK...Sam's eyes lit up immediately. Unfortunately, the makers of this play house failed to realize children younger than 8 might want to play too. He wasn't able to get up into the tunnels because the stair case was GIANT....well, the first two steps werent, but after that they quadrupled in height. When I realized he would never make it up into the thing, I had to go in and up the first two steps and pull him, kicking and screaming, out of the play place. I (with my 7 month preggo belly) had to haul him in one arm and our food in the other out to the car, with him pitching a royal fit the whole way. <br />
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Once again, feeling bad, I brought him to an out door play place at a church that is right across the street from our neighborhood. You have to hike up a huge hill to get there, and hills really make Sam out of breath (me too, really). He got half way up before I had to, yet again, haul him and our food (with my 7 month preggo belly) up the rest of the way. The playground was wet and dirty from the bad rain the night before, and it didn't take long for Sam's pant butt to be covered in brown wetness. When another little girl and her mom came, I right away told them Sam had cleaned the slides for them - I didn't want them to think he had pooed! Not 2 minutes later, Sam made a very obvious poo (not audible or smellable...he spent about 3 minutes crouched in a corner grunting)! Not wanting to break his heart and pull him away from yet another play place, I let him play for a few more minutes and then we made our exit.<br />
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I changed his diaper as soon as I got him home, and set him up on the couch in front of the TV (I know, I'm a terrible Mom) so that I could clean the kitchen. About 5 min later, Sam started crying out for Mommy with a very sad little voice. I walked out to the couch, and he was holding up his hands to me. Both were covered in a peanut butter like substance. Suddenly realizing what it was, I looked at where he was sitting. Somehow he had pooed (again) and it had come completely out of his diaper (which had become bunched to one side when I put him up on the couch). Sigh. Spent the rest of my time cleaning poo off of Sam and the couch. <br />
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Lessons learned thanks to Sam: 1. It takes effort to teach your kids how to sleep in bed with you, and I'm too lazy to try it again - ever. 2. Cookies may carry deep emotional meaning to a child, and you should not lie about what is or is not a cookie. 3. Stick with playgrounds you KNOW are YOUR kid friendly. 4. Poo happens.Kathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com3tag:blogger.com,1999:blog-8159112532534507269.post-16532307852367456322011-03-30T21:40:00.000-04:002011-03-30T21:40:22.481-04:00Glenn-iversaryToday is Sam's second Glenn-iversary. Two years ago, after a sudden medical crash where he nearly died, Sam went through a successful Bidirectional Glenn surgery at CHOA-Egleston in Atlanta. It was at the same time some of the worst and best moments of our lives together as a family. We went from rock bottom to new life. Sam has started pointing to his scar recently. He doesn't get it at all. He looks at it like he looks at his belly button or his toes...it's just a body part. But some day I hope he will look at it and feel proud and empowered by what he has gone through. I remember taking photos of Sam without his shirt on before his surgery (before he got really sick) because I thought I would be so sad when I looked at his little scarred chest...I wanted to remember him 'pure'. But I love his scars. They mean life and hope, and remind me what the power of prayer and love can accomplish. Love you baby Sam!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQvr4k6PGl0Ijt3UlBmE-yDsFwedsr3x8t35HLq0izVuctfYuxz6s2MH291yaGhksSuSxf5AcdmgPYa70Z-uIRfSpRzXiy_0tAv0NODZuZUOkJ6SqrPajjaanOV14iV7bL4GFomV_gj2k/s1600/DSC_0084.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQvr4k6PGl0Ijt3UlBmE-yDsFwedsr3x8t35HLq0izVuctfYuxz6s2MH291yaGhksSuSxf5AcdmgPYa70Z-uIRfSpRzXiy_0tAv0NODZuZUOkJ6SqrPajjaanOV14iV7bL4GFomV_gj2k/s320/DSC_0084.JPG" width="215" /></a></div>Kathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com3tag:blogger.com,1999:blog-8159112532534507269.post-22308689723388772792011-03-18T21:43:00.000-04:002011-03-18T21:43:22.022-04:00Oh Collaterals...We have seen the Cardiologist at LEAST every 3 months since Sam's first open heart surgery 2 years ago. We have been truly bless by 'good news' appointments. It was only a matter of time before something turned. We'll discuss the findings in a minute. First, let's discuss the laughable disaster that was our visit to the Cardio today...<br />
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Sam and I talked about going to the doctor all the way to the office. He was perfectly happy when we got there, and smiled at everyone. He charmed the nurse into turning on the big screen in the waiting room (we were the first people there today), and played with their 2 foot tall toy clock - probably the highlight of his day. Chris met us there and Sam and Daddy played in the waiting room while I signed a few papers. Another little boy came in. He had clearly just had surgery, based on how stiff he was moving and how his parents were holding him (you can't pick them up under the arms for 6 weeks after surgery). But Sam got the little boy to play and it wasn't long before the boy was looking much more 'loose' and comfortable laughing with Sam. Finally the nurse called us back. At the same moment, the fire alarm went off.<br />
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We all evacuated to the parking garage - Sam, the little boy, the nurses, the doctors...everyone. We were all standing in a circle talking about how this was their second alarm in 2 weeks. One of the nurses tried to point out a police car to Sam, and Daddy picked up Sam to help him see. Suddenly, I noticed a little wet spot showing up on Daddy shirt...apparently Sam's diaper got shifted and Sam got so excited about the police car, he peed all over Daddy. We walked to the car for a clothing change (for Sam, not poor Daddy), and Sam walked the whole way like he had something terribly uncomfortable in his pants...the doctors and nurses couldn't help but laugh.<br />
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Naturally when we returned to the building after the alarm, Sam was pissed...he thought he had gotten out without having to see the doctor. He cried through his EKG, BP read, and pulse ox read. His pulse ox was 84%. I was a little disappointed, since our most recent home readings were at 90%. Remember, they want him in mid 80s, and dropping lower would mean surgery time. So in my idiot mind, 90 is close enough to mid 80 to still be pretty damn good. Anyway, Sam was a good boy for his Echo. Luckily I had packed foot loops, and he ate them and watched Dora on the tv in the echo room while the lady took 30 minutes worth of photos.<br />
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The results were not bad, but not good. Sam has collateral vessels forming from his aortic arch heading towards his lungs (Aortopulmonary Collaterals...APCs). They are forming because our bodies are smart. His body knows he has low blood oxygen levels. So, it thinks it will fix it by building a secondary pathway for blood to get to the lungs to pick up some extra oxygen. Sounds good. But it's not. I mean, if there was no other surgical procedure, then we would be thanking his body for giving it a good try. But what initially starts off as a route to increase blood oxygen levels, eventually leads to blood flooding the lungs. It also increases the work load on the heart, which receives a then increased return of blood from the lungs. For a little heart already working double duty, this can quickly lead to heart failure. <br />
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The first signs of collateral vessels are increased blood oxygen levels and increased fatigue with activity. Both of which we have seen. I was so proud of those 90% readings a few weeks ago, but they may be a sign that some collateral vessels have already grown enough to reach the lungs. We had written off his seeming increase in fatigue with activity to the cold weather, frequent cold/ cough illnesses, and just a pure increase in chances to be active. But this may be a sign of the increased work load on his heart. Maybe. We don't know. The only way to know for sure is to do a heart cath. <br />
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Currently, the echo can only detect the start of the collaterals. They get to small to tell if they ACTUALLY have already reached his lungs, and they can also come from parts of the Aorta that can't be imaged by echo. Since Sam's EKG, BP, and today's oxygen readings were around his normal, the doctor doesn't think the problem is too wide spread. He wants to wait to see any changes over the next 3-6 months, and it sounds like that's the way it will be until it is decided that something needs to be done. If we can hold off the cath until the cath he gets as part of his pre-Fontan surgery work up, that would be ideal. We'll see. Collateral vessels are common and almost expected in Glenn and Fontan patients, but I was hoping we could hold them off a little longer. <br />
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So it's not total devastating news, but it's just not the best news ever. We got to pretend for the last 2 years that things were 'normal'...ish. Trust me, it never leaves my mind what Sam will deal with in his life. Now I can't stop thinking about freakin' collaterals and what they might mean or do. BLAH. I still feel like we are just about the most healthy Tricuspid Atresia/HRHS kid we know...we know plenty of kids with the same diagnosis who have extra diagnoses/conditions/problems on top of that which have caused any number of complications. It makes me bitter to have to add a complication to our list.<br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">I kept Sam home with me today (today is my one day off from work during the week, usually reserved for cleaning the house and errands). I wanted to hold him a little tighter today. We went shopping for new clothes for him, new toys for him, and got a cupcake from a fancy bakery in town for him. He enjoyed it all, and enjoyed bossing Mommy around all day, too. I tried to take a photo of him in his new clothes (and his new hair cut from yesterday), but he wasn't having anything to do with the camera today. You'll have to live off of an older photo (from about a week ago...). I love him.</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvyLQ8JNw8nqqMvVTRoqShIl0h5BdUt9hoDrvIJunOPE84Eh4hAPb9hcZZMva_Ol79YJ-5kA5AU_GYR2Np81Bg_lpdkDwNcEnMSRWeXOhiKskzd-OVCxrtaI0ccvm8qZsrTgZhCPl-FOc/s1600/DSC_0194.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="267" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvyLQ8JNw8nqqMvVTRoqShIl0h5BdUt9hoDrvIJunOPE84Eh4hAPb9hcZZMva_Ol79YJ-5kA5AU_GYR2Np81Bg_lpdkDwNcEnMSRWeXOhiKskzd-OVCxrtaI0ccvm8qZsrTgZhCPl-FOc/s400/DSC_0194.JPG" width="400" /></a></div>Kathyhttp://www.blogger.com/profile/11008369766558385188noreply@blogger.com4