Well Logan, it's January now and I finally have some time to write and record the last few months! My last blog was right after your first birthday.
The end of November was pretty calm. You had two ultrasounds to check your liver and rule out any portal hypertension, the results came back all clear! Dr. Atay said the liver was still obviously swollen and damaged but the same as before. No worse! I think they continued to be surprised at how good your doing while the liver appears to be in such bad shape. Although we have had slight fevers and white stool we managed to avoid the hospital and celebrated Thanksgiving at home with our family!!!
December brought more fun! Dad's new job allowed us to have every weekend off together, we didn't get to do a whole lot of activities but we did a few typical Christmas things. We went with Devin, Maw, Granddad, Mike, Christina, Maverick, Addison and Will to the Celebration in Lights at the park and walked through. It wasn't too cold and you seemed to enjoy the shuttle ride and the lights. You've been walking for awhile now and were pulling Maw all over the place. We picked out our Christmas tree and all decorated it together. Mostly you just threw every ornament you could get your hands on! Your starting to try to run and getting into everything! Our tree was bare at the bottom because you pulled everything off! Christmas is all about love and hope and gratitude and this year we got to do something very cool. A friend of your granddad's, Lee and his wife Nikki wanted to do a fundraiser for you! It was called Buddies for Logan! A lot of people were kind enough to donate money for the buddies, little stuffed animals that hold a Scentsy pack and smell good, when they came in we got to deliver them to the Ronald McDonald House in Norfolk! Nikki did a lot of work on this and your father and I were truly touched by the kindness. You spent your first Christmas in a hospital and it broke my heart. Nikki and Lee gave us the opportunity to give back and hopefully make some sick children, who couldn't be home for Christmas, a little happier on Christmas morning. That's huge ❤ As you get older Logan , you'll understand how important it is to give back. And you will get to meet these wonderful people! You'll also get to meet some of our great online friends as well. I've been following several babies your age with biliary atresia, one of them, Daniella, stole my heart right away. She is a gorgeous little girl and your dad and I watched her page closely and prayed for her to get a liver. And she did! A beautiful young lady donated a part of her liver for Daniella. Daniella has a great family, her mother Christine and aunt Melanie are amazing people. They had a fundraiser for her and sent you a check to help with your Christmas!! I don't know if I really have the right words yet to say how grateful we are for these friends and their help. It makes me tear up now thinking of how lucky we are to have people who care about others so much. I hope by the time you read this, we're in a better position to give back. You got a lot of Christmas cards from your online friends and I saved them all for you. And you got presents from several people as well. Katie always sends you presents, I hope by the time you read this, you have already met Katie. She has been a huge part of helping me to deal with biliary atresia and the way she lives her life, full of love and hope, even though her heart is broken is an inspiration to so many people. I wonder if you know Bryson? Sometimes you point into the air and smile and talk. It's normal for small babies to do that but even now you do it, I wonder who or what you see?
We had a scare Christmas Eve when you spiked a fever, we had to miss the tradition of baking cookies with the family. But we made cookies at home together and the fever went away!! We were staying home for Christmas!! You and Devin both woke up kind of late, opened all your presents and had a huge breakfast. We spent Christmas day at Maw and Granddad's house, where you got lots more toys and a Super Why doll that Maw made for you because its your favorite show right now. The day after Christmas we went to visit Grandma, Jarrod, Lorrie and Caleb, you and your cousin had a good time opening and playing with your toys. As you get older and you lose people, holidays like Christmas get more bitter sweet. This was the first Christmas without Nana but I know she sees you and Caleb playing together and smiles. I often wonder what my Papa and GG would have thought about you! They probably send all their super angel powers to pull you through tough times.
New Years Eve was much less eventful this year! Instead of the hospital and you ripping out IV's , we went to Mike and Christina's house and had snacks, played with Addy and Will, danced and you passed out before midnight. Will was already in bed and Addy, maybe Mike too, barely made it to see the ball drop and say Happy 2015!!!! I hope it brings less hospital stays and more family time.
January 2, 2015 we took you in to the pediatricians office and got your shots and blood work done. The labs are getting a lot more scary to you. You know exactly what it means when they come in with the tray and you start grabbing me and crying. I wish there was another way sweet boy, but there isn't. I hate that this will always be a part of your life but I know you will get used to it and be brave. January 2 also marked the one year anniversary of your Kasai procedure. I really can't believe its been a year. I don't know if its because I'm getting older or because you've made me more thankful for everyday, the year seemed to fly by and stand still all at once . Looking back at your pictures hurts and make me proud. You were so small but so determined. I'll never forget waiting in that room for them to come get you, I've wondered so many times what happened after they took you? Were you scared? Did you wonder what was happening? After we were home, when I changed your clothes and you were naked, you would stiffen up, throw your arms out, shake you head back and forth, screaming. I told your Dad I thought you might remember them putting you the operating table, before the anesthesia kicked in. Who knows what an 8 week old remembers? I'll never forget seeing you after the surgery. Honestly, you looked better than I thought you would but still it was terrifying. No matter what is happening when you read this, if you are still Kasai only, or if you have had a transplant, i want you to be proud of how hard you fought. Making it through that surgery, recovering so quickly, getting released from the hospital early, you fought like to hell to make that happen and be proud of that. Be proud of who you are, no one can ever take away what a fighter you are and we are all so proud. I have no doubt that you will be a happy kid, you have faced so much as a baby and stayed so happy. It's been such a blessing to watch you leave that stage of life, the baby stage behind and watch you become a toddler.
On the anniversary of the day you got released from the hospital, we made cupcakes together to celebrate all you've done in the past year. Our days are much better now and you are doing incredibly well, your liver numbers are back to normal, your white blood cells are back to normal. Our last visit to Dr.Atay was pretty boring, your weighing in at almost 24 pounds and 30" tall. You no longer tolerate the nurses trying to hold you, weigh you, measure you or even talk to you. You do better with Dr. Atay and cry a little but lay still as he measures your liver. They have pushed your labs and visits back to every three months now from every six weeks so at least you get less labs!We keep you out of large crowds during flu season now and constantly sanitize everything to kill the germs. I've learned by touching you if your temperature is even a degree higher than normal but other than some normal teething fevers, you have been fever and infection free for months. It's been about five months since you last were admitted to the hospital which is your longest streak yet!
Because of the BA you have some troubles on a daily basis. At 14 months, you have only slept through the night twice. You have a hard time eating a lot at one time so you just graze all day, you love yogurt, french fries, turkey , potatoes, cookies, cheese curls, string cheese, bananas , applesauce and cereal . But at night you get a lot of stomach pains, hunger pains, gas pains and have a hard time sleeping. You still sleep with me and daddy, you've never done well in your crib and I hate the idea of you in there alone. On average you wake up about two or three times a night but sometimes it's every hour. Those are the nights you end up sleeping on my face haha. Those are the nights we get in lots of cuddles and love . I hope as you get older you will be more comfortable. You are such a fun kid to be around, you are always happy and now you have become an adventure seeker! Haven't you had enough adventure? The answer is no, you learned to climb and now you jump off everything! Up until yesterday you waited for me to catch you but now your are trying to jump by yourself. And you are very proud of yourself when you do it. You have become so animated too, you make ridiculous faces that crack me up and you have the best smiles ever! Due to all the changes and your personality emerging more everyday you have earned a lot of nick names! When I was pregnant, I often called you LoGo, because your moved so much or Logi because it's cute. But now I call you Smiley and Devin calls you Bear. You love your brother and he loves you, he comes downstairs every morning and picks you up and says "Hey Bear" and you just light up. You have a good older brother Logan, Devin is a good kid, he has a big heart, it's not easy for him to see you sick and he worries for you. I don't know what will happen by the time you read this, maybe you will be a big brother too?
So a year after the Kasai, the surgery that gave us time, more time before transplant, more time at home, more time with you, I want you to know that everyday has been a blessing. We have all gone through a lot of changes this past year. Most of it happy and some of it sad. We lost people we loved , both to death and to circumstance. A lot of the people we thought were our friends turned out not to be and a lot of people we didn't know this time last year turned out to be amazing friends. I'm 34 and I'm still figuring out the best advice to give you and Devin. Maybe it's simple... Actions speak louder than words. We are going to try to surround both of you with people who really love you and have your best interests at heart but eventually you will meet people who don't. Don't let that ever drag you down, let go of those people and focus on love Logan. Because life is short, I have a feeling you will realize that long before your father and I did. My goal of this website and this blog is to give you hope and strength when you need it. To help you tell your story. I hope when you read it, you can feel how loved you are everyday.
The end of November was pretty calm. You had two ultrasounds to check your liver and rule out any portal hypertension, the results came back all clear! Dr. Atay said the liver was still obviously swollen and damaged but the same as before. No worse! I think they continued to be surprised at how good your doing while the liver appears to be in such bad shape. Although we have had slight fevers and white stool we managed to avoid the hospital and celebrated Thanksgiving at home with our family!!!
December brought more fun! Dad's new job allowed us to have every weekend off together, we didn't get to do a whole lot of activities but we did a few typical Christmas things. We went with Devin, Maw, Granddad, Mike, Christina, Maverick, Addison and Will to the Celebration in Lights at the park and walked through. It wasn't too cold and you seemed to enjoy the shuttle ride and the lights. You've been walking for awhile now and were pulling Maw all over the place. We picked out our Christmas tree and all decorated it together. Mostly you just threw every ornament you could get your hands on! Your starting to try to run and getting into everything! Our tree was bare at the bottom because you pulled everything off! Christmas is all about love and hope and gratitude and this year we got to do something very cool. A friend of your granddad's, Lee and his wife Nikki wanted to do a fundraiser for you! It was called Buddies for Logan! A lot of people were kind enough to donate money for the buddies, little stuffed animals that hold a Scentsy pack and smell good, when they came in we got to deliver them to the Ronald McDonald House in Norfolk! Nikki did a lot of work on this and your father and I were truly touched by the kindness. You spent your first Christmas in a hospital and it broke my heart. Nikki and Lee gave us the opportunity to give back and hopefully make some sick children, who couldn't be home for Christmas, a little happier on Christmas morning. That's huge ❤ As you get older Logan , you'll understand how important it is to give back. And you will get to meet these wonderful people! You'll also get to meet some of our great online friends as well. I've been following several babies your age with biliary atresia, one of them, Daniella, stole my heart right away. She is a gorgeous little girl and your dad and I watched her page closely and prayed for her to get a liver. And she did! A beautiful young lady donated a part of her liver for Daniella. Daniella has a great family, her mother Christine and aunt Melanie are amazing people. They had a fundraiser for her and sent you a check to help with your Christmas!! I don't know if I really have the right words yet to say how grateful we are for these friends and their help. It makes me tear up now thinking of how lucky we are to have people who care about others so much. I hope by the time you read this, we're in a better position to give back. You got a lot of Christmas cards from your online friends and I saved them all for you. And you got presents from several people as well. Katie always sends you presents, I hope by the time you read this, you have already met Katie. She has been a huge part of helping me to deal with biliary atresia and the way she lives her life, full of love and hope, even though her heart is broken is an inspiration to so many people. I wonder if you know Bryson? Sometimes you point into the air and smile and talk. It's normal for small babies to do that but even now you do it, I wonder who or what you see?
We had a scare Christmas Eve when you spiked a fever, we had to miss the tradition of baking cookies with the family. But we made cookies at home together and the fever went away!! We were staying home for Christmas!! You and Devin both woke up kind of late, opened all your presents and had a huge breakfast. We spent Christmas day at Maw and Granddad's house, where you got lots more toys and a Super Why doll that Maw made for you because its your favorite show right now. The day after Christmas we went to visit Grandma, Jarrod, Lorrie and Caleb, you and your cousin had a good time opening and playing with your toys. As you get older and you lose people, holidays like Christmas get more bitter sweet. This was the first Christmas without Nana but I know she sees you and Caleb playing together and smiles. I often wonder what my Papa and GG would have thought about you! They probably send all their super angel powers to pull you through tough times.
New Years Eve was much less eventful this year! Instead of the hospital and you ripping out IV's , we went to Mike and Christina's house and had snacks, played with Addy and Will, danced and you passed out before midnight. Will was already in bed and Addy, maybe Mike too, barely made it to see the ball drop and say Happy 2015!!!! I hope it brings less hospital stays and more family time.
January 2, 2015 we took you in to the pediatricians office and got your shots and blood work done. The labs are getting a lot more scary to you. You know exactly what it means when they come in with the tray and you start grabbing me and crying. I wish there was another way sweet boy, but there isn't. I hate that this will always be a part of your life but I know you will get used to it and be brave. January 2 also marked the one year anniversary of your Kasai procedure. I really can't believe its been a year. I don't know if its because I'm getting older or because you've made me more thankful for everyday, the year seemed to fly by and stand still all at once . Looking back at your pictures hurts and make me proud. You were so small but so determined. I'll never forget waiting in that room for them to come get you, I've wondered so many times what happened after they took you? Were you scared? Did you wonder what was happening? After we were home, when I changed your clothes and you were naked, you would stiffen up, throw your arms out, shake you head back and forth, screaming. I told your Dad I thought you might remember them putting you the operating table, before the anesthesia kicked in. Who knows what an 8 week old remembers? I'll never forget seeing you after the surgery. Honestly, you looked better than I thought you would but still it was terrifying. No matter what is happening when you read this, if you are still Kasai only, or if you have had a transplant, i want you to be proud of how hard you fought. Making it through that surgery, recovering so quickly, getting released from the hospital early, you fought like to hell to make that happen and be proud of that. Be proud of who you are, no one can ever take away what a fighter you are and we are all so proud. I have no doubt that you will be a happy kid, you have faced so much as a baby and stayed so happy. It's been such a blessing to watch you leave that stage of life, the baby stage behind and watch you become a toddler.
On the anniversary of the day you got released from the hospital, we made cupcakes together to celebrate all you've done in the past year. Our days are much better now and you are doing incredibly well, your liver numbers are back to normal, your white blood cells are back to normal. Our last visit to Dr.Atay was pretty boring, your weighing in at almost 24 pounds and 30" tall. You no longer tolerate the nurses trying to hold you, weigh you, measure you or even talk to you. You do better with Dr. Atay and cry a little but lay still as he measures your liver. They have pushed your labs and visits back to every three months now from every six weeks so at least you get less labs!We keep you out of large crowds during flu season now and constantly sanitize everything to kill the germs. I've learned by touching you if your temperature is even a degree higher than normal but other than some normal teething fevers, you have been fever and infection free for months. It's been about five months since you last were admitted to the hospital which is your longest streak yet!
Because of the BA you have some troubles on a daily basis. At 14 months, you have only slept through the night twice. You have a hard time eating a lot at one time so you just graze all day, you love yogurt, french fries, turkey , potatoes, cookies, cheese curls, string cheese, bananas , applesauce and cereal . But at night you get a lot of stomach pains, hunger pains, gas pains and have a hard time sleeping. You still sleep with me and daddy, you've never done well in your crib and I hate the idea of you in there alone. On average you wake up about two or three times a night but sometimes it's every hour. Those are the nights you end up sleeping on my face haha. Those are the nights we get in lots of cuddles and love . I hope as you get older you will be more comfortable. You are such a fun kid to be around, you are always happy and now you have become an adventure seeker! Haven't you had enough adventure? The answer is no, you learned to climb and now you jump off everything! Up until yesterday you waited for me to catch you but now your are trying to jump by yourself. And you are very proud of yourself when you do it. You have become so animated too, you make ridiculous faces that crack me up and you have the best smiles ever! Due to all the changes and your personality emerging more everyday you have earned a lot of nick names! When I was pregnant, I often called you LoGo, because your moved so much or Logi because it's cute. But now I call you Smiley and Devin calls you Bear. You love your brother and he loves you, he comes downstairs every morning and picks you up and says "Hey Bear" and you just light up. You have a good older brother Logan, Devin is a good kid, he has a big heart, it's not easy for him to see you sick and he worries for you. I don't know what will happen by the time you read this, maybe you will be a big brother too?
So a year after the Kasai, the surgery that gave us time, more time before transplant, more time at home, more time with you, I want you to know that everyday has been a blessing. We have all gone through a lot of changes this past year. Most of it happy and some of it sad. We lost people we loved , both to death and to circumstance. A lot of the people we thought were our friends turned out not to be and a lot of people we didn't know this time last year turned out to be amazing friends. I'm 34 and I'm still figuring out the best advice to give you and Devin. Maybe it's simple... Actions speak louder than words. We are going to try to surround both of you with people who really love you and have your best interests at heart but eventually you will meet people who don't. Don't let that ever drag you down, let go of those people and focus on love Logan. Because life is short, I have a feeling you will realize that long before your father and I did. My goal of this website and this blog is to give you hope and strength when you need it. To help you tell your story. I hope when you read it, you can feel how loved you are everyday.