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.
Thursday, October 29, 2009
Malakai's Donor Angel
I found out a few days ago that Malakai's donor angel was a 10 year old girl who was killed in a car accident. I have had questions for almost 6 months about if his angel was a boy or a girl and how she died. Not that it makes it any easier to lose a child, but I'd wondered how she passed. Now that I know, it opens up a ton more questions. I feel like, for the first time, I mourned for her family. I was deeply saddened to find out. His donor was a real child, with a real family. They made the decision, in their darkest hours, to donate her organs. And they saved Malakai's life. I will never be able to fully explain to them how much I love them for their decision. I hope they choose to write me back, but I totally understand if they choose not to. I just need to get the courage and words to write to them. I just don't know how I am going to express the gratitude that I feel in my heart. It will be hard, but I definatly have to do it. I want them to know that without their generousity, Malakai may not have survived. If you're not an organ donor, please think about it. No one wants to think about dying, but think about the potential lives you could save, should something happen. There are far more people waiting for organs, than there are organs available. Just something to think about.
Friday, October 23, 2009
St. Louis visit went well...
Well, everything is fine! Malakai is FINALLY on the height growth curve. He's only in the 10th percentile, but he is on the curve! He's not, however, on the curve for weight. Our little guy wasn't even 17 pounds yet. But, he has had diarrhea for over a month now. They think his GI tract is just having a hard time getting over this illness. There's not a medication they can give him to make him stop, so we have to wait. They took another stool sample to finish the testing they started. He got the first of his seasonal flu shot and we'll have to get the second one in a month. Trying to find information on the H1N1 vaccine is ridiculous!! He should be on the top of "the list" but no one seems to know who to contact about "the list" In the past, I wouldn't have even probably thought about the vaccine, but with Malakai I feel like it's not even an option! So much to think about now! Anyways, we won't have to go back to clinic until January, which is great news!!
We are hoping and praying that we have a peaceful couple of months. We'd really, really like to go on a family vacation somewhere warm. It'd be nice to get away and relax!!! We had a complete stranger approach us at Cracker Barrell the other day and say "You two need to get away, just the two of you. Go somewhere...you need it, I can tell" I said "If you only knew..."
Anyway, all is well here. I am so thankful things seem to finally be settling down and returning to normal. Makena is growing into a little lady and Malakai is really starting to babble and scoot around the floor. It's an amazing thing to watch children grow...
We are hoping and praying that we have a peaceful couple of months. We'd really, really like to go on a family vacation somewhere warm. It'd be nice to get away and relax!!! We had a complete stranger approach us at Cracker Barrell the other day and say "You two need to get away, just the two of you. Go somewhere...you need it, I can tell" I said "If you only knew..."
Anyway, all is well here. I am so thankful things seem to finally be settling down and returning to normal. Makena is growing into a little lady and Malakai is really starting to babble and scoot around the floor. It's an amazing thing to watch children grow...
Friday, October 16, 2009
Malakai is still fighting this bug!
It has been 4 weeks now, and Malakai is still fighting whatever it is that he originally got the day of his birthday party. He's had loose stools and very little appetite for almost a month now! I sent in another stool culture today to re-check for certain viruses. I hope and pray that he gets over all of this soon. He's only up about one pound since July. He got up over 17 pounds a few days ago, but his appetite has once again decreased, and his weight is back to 16 lbs 10 oz. He is starting to army crawl and get where he wants to go. It's so cute to watch him get his eye on something and go after it! He's also starting to stand and hold onto toys. He can stand a good 5 minutes before getting tired. He's not taking steps yet, even while holding on to your fingers. I know he'll catch up. It's kind of hard because Makena was ahead of kiddos her age. She was walking all over the place at 10 months. So it's hard not to compare, even knowing what he's been through.
I was very sick a couple weeks ago. I don't know that I have ever been that sick. Makena got it the same night I did. We're both better, but Malakai doesn't seem to be over it completely. And tonight, Josh is sick. I can't believe how widespread all this sickness is. I feel like we need to shell Malakai in and not let him out in public. I've become a sanitizer freak and wipe down everything he comes into contact with while we are outside the house.
Malakai has a liver friend, Eden, who is going to recieve a part of her momma's liver on the 26th of this month. Eden turned one in May and I think of her daily. I hope and pray she recovers quickly. I can't wait for her parents to be on the other side of transplant. Watching your childs health worsen is one of the hardest things to do as a parent. I'm so glad Erica (her mom) was a match and they can go on with the surgery.
I tried to upload pictures to my blog but for whatever reason, it wouldn't let me...so here are some pictures from my Facebook page...
http://www.facebook.com/album.php?aid=163903&id=508339417&l=cbdf02865c
Here are the pictures from his birthday party:
http://www.facebook.com/album.php?aid=157141&id=508339417&l=8e32a29679
I was very sick a couple weeks ago. I don't know that I have ever been that sick. Makena got it the same night I did. We're both better, but Malakai doesn't seem to be over it completely. And tonight, Josh is sick. I can't believe how widespread all this sickness is. I feel like we need to shell Malakai in and not let him out in public. I've become a sanitizer freak and wipe down everything he comes into contact with while we are outside the house.
Malakai has a liver friend, Eden, who is going to recieve a part of her momma's liver on the 26th of this month. Eden turned one in May and I think of her daily. I hope and pray she recovers quickly. I can't wait for her parents to be on the other side of transplant. Watching your childs health worsen is one of the hardest things to do as a parent. I'm so glad Erica (her mom) was a match and they can go on with the surgery.
I tried to upload pictures to my blog but for whatever reason, it wouldn't let me...so here are some pictures from my Facebook page...
http://www.facebook.com/album.php?aid=163903&id=508339417&l=cbdf02865c
Here are the pictures from his birthday party:
http://www.facebook.com/album.php?aid=157141&id=508339417&l=8e32a29679
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