Malakai was born Sep 24, 2008. At four weeks old, multiple tests determined he had a rare liver disease called Biliary Atresia. BA is when the bile duct between the liver and the small intestine is blocked or absent. He had his first surgery Nov 6 to temporarily fix the problem. During a five week hospital stay for ascites, Malakai was put on the transplant list on Mar 20. He recieved his "Gift of Life" May 12, 2009 at Children's Hospital in St. Louis.
Friday, January 23, 2009
He rolled over!!
I went into Malakai's room when he woke up at midnight, and he was on his back! He sleeps on his belly and he'd rolled over! He smiled really big when he saw me, and I said "When did you learn to roll over?" And he smiled as if he were proud of himself! Poor little guy barely gets to lay on the floor because Makena will not leave him alone when he is on the floor...she wants to be on top of him, or trying to pick him up. So I was shocked he'd rolled over! We'll see if this continues, I'm going to try to let him be on the floor more. He'll be four months old tomorrow...time goes by way too fast!
Wednesday, January 21, 2009
Riley update
Malakai had his appointment Friday the 16th at Riley. He weighed 12 lbs. 3.1 oz and was 23 inches long! He's a growing boy. At his last appointment December 12, he weight 10 lbs. 8 oz. So we're doing something right! The doc said he looked really good, he never really has anything to report. He's never had a fever, never acted like he didn't feel good. He's been such a great baby. Anyways, HIS LEVELS WERE DOWN!! Praise the Lord! Our prayers have been awnsered. The highest they got were 9.8 before the Kasai surgery, they dropped as low as 6.7 but shot back up within a week. Then as of last week, his levels were 5.6! And his direct was 3.5! This is great news! We will continue to pray for healing and trust that his surgery worked. God is so good!
Then on Saturday, my birthday, we went to Stone Creek Dining Company with Mom, Sarah, Dan, Rita and Brent. We all had sitters for the kids. It has been a few years since all of us have been out, to a quiet dinner. It was nice. Then Josh and I went to Starbucks and waited for our movie to start. We saw a terrible movie, but it was nice to have some "adult time."
Last night was a horrible night of sleep. I put him to bed at 10 and was in bed by 10:30, then he was up at 12:45, 2:15, then at 3:15 woke up and I decided I was not going to feed him. I kept getting out of bed to put his binky back in his mouth, then finally at 4:15 decided I had enough, and nursed him. Then he was back up at 5:45 and 7:45. I was nursing him at 7:45 and Makena started yelling "MOMMY, WAKE UP, MOMMMMMY!!!! WAAAAAAKE UPPPPP!!!" Needless to say, I didn't get very good sleep last night. Maybe I'll take a nap when the kids do!
Then on Saturday, my birthday, we went to Stone Creek Dining Company with Mom, Sarah, Dan, Rita and Brent. We all had sitters for the kids. It has been a few years since all of us have been out, to a quiet dinner. It was nice. Then Josh and I went to Starbucks and waited for our movie to start. We saw a terrible movie, but it was nice to have some "adult time."
Last night was a horrible night of sleep. I put him to bed at 10 and was in bed by 10:30, then he was up at 12:45, 2:15, then at 3:15 woke up and I decided I was not going to feed him. I kept getting out of bed to put his binky back in his mouth, then finally at 4:15 decided I had enough, and nursed him. Then he was back up at 5:45 and 7:45. I was nursing him at 7:45 and Makena started yelling "MOMMY, WAKE UP, MOMMMMMY!!!! WAAAAAAKE UPPPPP!!!" Needless to say, I didn't get very good sleep last night. Maybe I'll take a nap when the kids do!
Wednesday, January 14, 2009
Snowy Day!
Today it is snowing like crazy, and I love it! Sarah, Dan and Emma are here and we plan to go play in it in a little while. Hopefully I can get some cute pics of the girls playing :)
I had to take Malakai to the hospital yesterday for a blood draw. I think it was the worst one yet. He screamed, and screamed, and screamed some more. It was awful. He cried so hard he has a blood vessel in his eye that looks like it's broken! She had a hard time finding his vein and he didn't like her attempting to find it. I hate it for him. I wish I could go through it for him. Poor baby has had blood drawn more in his short life than Daddy has in his entire life! But last night he was back to his normal, happy self. I said to Josh, "I don't think I could be any more in love with him than I am already!" He is such an easy baby to love. He just loves to cuddle and he smiles all the time. He started to laugh yesterday. It was the first time he's really laughed consistently. I would say "Boo" and he would laugh, I would make a funny face, and he'd laugh. He was just so sweet! Baby giggles are the sweetest sound!
We took the kids to Chuck E Cheese on Saturday. There isn't much else to do on a cold, winter day. They are a little bit too young to really enjoy it. We spent a few hours there, and called it a day! Here's the best pic of the four together.
Friday, January 9, 2009
I guess it's time to start a blog
I've been meaning to start writing a few times a week to keep everyone updated on our life. I've never done this so it may take a little while to figure everything out! So here it goes.
Malakai is doing well. He's 9 weeks post-Kasai and we're still waiting for his levels to drop. It's all a waiting game, a very hard waiting game. We've continued to pray daily that his levels go down, his liver and spleen decrease in size, his color to return to normal, and the whites of his eyes to turn white. Just in the last few weeks his color has really improved. Everyone who sees him comments on how good he looks. His next appointment is January 16th, he'll get his blood drawn and we'll see where he stands. He's both breastfeeding and on a high calorie formula. He's had a little trouble gaining weight so he can't be solely on breastmilk. I don't want to entirely give up breastfeeding unless I have to. We both enjoy the bonding that comes with it, so I don't want to stop unless medically necessary. He's starting to laugh, and it just melts my heart. I think (and secretly hope) he's a momma's boy. He loves to cuddle and wants nothing more than to lay in your arms and be rocked. He's found his hands and always has them in his mouth.
Makena is a typical 2 year old. She loves to talk and is starting to become such a little kid. It's amazing how fast she's grown up, even since Malakai's arrival. She's counting in both English and Spanish, thanks to Dora and Diego. Just the other day she said her first "real" sentence. I was in the living room and came into the kitchen to find Makena into something she shouldn't be in. Her response when she was "caught red-handed?..." "I'm making Kai-Kai a bottle." She said it clear as day. She had gotten into their diaper bag, got out the formula and a bottle, and was trying to make him a bottle. She had the formula actually poured into the bottle. I was impressed, and she was too cute to be upset with. Little things like this is what gets me through my days. I think we are going to tackle the dreaded task of potty training. Wish me luck, I think I'll need it!
I will try to continue to write every few days and keep updated our life.
Malakai is doing well. He's 9 weeks post-Kasai and we're still waiting for his levels to drop. It's all a waiting game, a very hard waiting game. We've continued to pray daily that his levels go down, his liver and spleen decrease in size, his color to return to normal, and the whites of his eyes to turn white. Just in the last few weeks his color has really improved. Everyone who sees him comments on how good he looks. His next appointment is January 16th, he'll get his blood drawn and we'll see where he stands. He's both breastfeeding and on a high calorie formula. He's had a little trouble gaining weight so he can't be solely on breastmilk. I don't want to entirely give up breastfeeding unless I have to. We both enjoy the bonding that comes with it, so I don't want to stop unless medically necessary. He's starting to laugh, and it just melts my heart. I think (and secretly hope) he's a momma's boy. He loves to cuddle and wants nothing more than to lay in your arms and be rocked. He's found his hands and always has them in his mouth.
Makena is a typical 2 year old. She loves to talk and is starting to become such a little kid. It's amazing how fast she's grown up, even since Malakai's arrival. She's counting in both English and Spanish, thanks to Dora and Diego. Just the other day she said her first "real" sentence. I was in the living room and came into the kitchen to find Makena into something she shouldn't be in. Her response when she was "caught red-handed?..." "I'm making Kai-Kai a bottle." She said it clear as day. She had gotten into their diaper bag, got out the formula and a bottle, and was trying to make him a bottle. She had the formula actually poured into the bottle. I was impressed, and she was too cute to be upset with. Little things like this is what gets me through my days. I think we are going to tackle the dreaded task of potty training. Wish me luck, I think I'll need it!
I will try to continue to write every few days and keep updated our life.
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