New pics

Malakai and his new cousins, Jack and Addison, keeping cool under a shade tent at the fireworksMy two beautiful children...He absolutly adores his sister!

My all time favorite picture of them together

She had a blast dancing to the musicLook at those chubby cheeks :)

Fun filled weekend!

We had such a fun weekend! We spent some time at Aunt Rita's house on Thursday and Friday. Makena loves spending time with her cousins, and I love spending time with my sisters, so it all works out. Then Saturday we had a showing on our house (Praying it sells soon!!) and went to the Greenwood fireworks. It's a tradition in our family, something we've gone to every year since I was little! It was so hot out, we had a small tent for the babies and brought plenty of cold drinks! We saw a few people we knew, and everyone was amazed at how great Malakai looked :) I agree, he looks amazing! You'd never guess that he had a liver transplant less than 2 months ago! Both kids did great during the fireworks. He was very sleepy so he was wanting to be rocked, and Makena was amazed by them...it didn't last long though, she fell asleep during them! HAHA! She pulled the shade of the stroller over her and was out! Yesterday was Emma's 3rd birthday party. I got her a goldfish...anyone looking for a great gift for a birthday? A goldfish was a great idea! She loved it and so did all the other kids!

The local newspaper had an article in it the other day about Malakai. It was so weird reading about our story from a third party perspective. I felt emotional reading it...it pulled on my heart strings, and it was about my family! I am just so relieved he is doing so well and that we are home. All of this is behind us and we can move on and be a normal family!

Malakai's blood test showed he was having a slight case of rejection, which is normal. They've reduced his anti-rejections medication again. Other than that, he has nothing new medically to report. He's physically getting stronger which is GREAT to see! I am so thankful to see him progressing as quickly as he is. It's amazing :)

Finally an update!

Sorry it's been sooo long since an update! We got home and our home phone and internet were both shut off since we were gone so long. We couldn't get the internet back up until we had a running phone line, and they couldn't make it out here until today!

Other than running to the store once, and out to ice cream with my family I haven't left the house. I really haven't minded too much though. We've had alot of visitors, which has been very nice. If you're thinking about visiting, we'd love to see you :) Malakai can't be in public for another month or so to keep the risk of him getting an infection low. After he's off his steroids, he'll be normal and able to go out. Thankfully he can go outside...hopefully we'll be planning a trip to the zoo or something fun soon!

Malakai is doing AWESOME! He is doing things I wouldn't have thought he'd be doing until a month from now. He's rolling over, sitting up for a minute or two unassisted, he's standing with support, he's still eating like a pro, he's waving bye-bye (my personal favorite) and new today...he's drinking juice from a bottle! And last night he slept a 4 1/2 hour stretch...that's the longest he's gone in months! I am just tickled with how well he's doing. He has a few appointments coming up, one with his primary pediatrician, and one with the team at Riley. His docs in STL wanted him to be seen close to home so the docs here would know his "baseline" Then we will have a home health nurse come out once a week and draw his blood levels. Other than that, we won't have to go back to STL until next month!

We had a work day at the house on Saturday. THANK YOU to everyone who came out and helped. It was such a blessing to us to have the help. We got the outside of our home almost completely done (landscaping, power washing, weeding, etc)! Then Sunday, with the help of some great people, we cleaned out our basement. That was an accumulation of about 6 years of stuff! So glad it's done! Those were the things we'd wanted to do for awhile now, but with Malakai being ill, it just didn't happen. I want to say a special thank you to Derek and Candy. They stepped up and helped us out like family would do. We are so grateful to have you as friends! God bless you and your family!! I also want to thank everyone who's given us financial help. We thank you from the bottom of our hearts. God bless you all!

We had a reporter come out today to do a piece in the local paper about Malakai. It'll be interesting to see how that turns out! It was difficult to tell his story, start to finish, to someone who knew nothing about him...I mean where exactly do you start and what information is important? Hopefully I portrayed his story accurately!

That's all I can think of right now. I have a lot of cleaning to do while the kids are sleeping. Now that our internet is up and running, hopefully I can keep this updated a little better!

Our journey in St. Louis is almost over...

These pictures are in reverse order newest pictures first...Blogger does that for some reason...I could fix it, but trying to nurse a baby and keep a toddler from going crazy is more important :)

Here's a picture of his beautiful scar...Thanks Dr. Anderson and Dr. Lowell, it looks awesome!

Can you see the chub on his legs? Awesome !!

My beautiful little boy...ice cream on his face and all!

It's getting harder and harder to get a decent picture of Makena. She's on-the-go all the time!

Makena pushing Malakai in her doll stroller, doesn't he look thrilled?

Riding Kena's bike

Eating Lasagna, his absolute favorite food!

This one was taken while he was still in the hospital, notice his feet crossed??

Meeting his cousin Addison for the first time, I think he loves her already :)

Munching on a bagel

We are going home TOMORROW! It's been a long 8 months, but I am so excited to be bringing home a healthy baby boy! His ultrasound on Friday came back completely normal. I totally expected it would. He's still having a few issues with his Tacro levels being a little low. When we left the hospital, his dosage was 0.4, they increased it to 1.0, 1.6, 2.0, 2.4 and now it's to 3.0. He lost a few ounces when we went in yesterday, but he hadn't eaten breakfast yet and he's no longer on the tube feeds at night. So I can only guess that is normal. He was 13 lb 6.8 oz.

Cindy (Josh's mom) came in last night and she was amazed at how he looks. Pictures don't do him any justice. You have to SEE him to see the big difference. He's starting to sit up on his own, and he's able to stand with support. It's incredible!

Josh's friend, Derek, is putting together a work day at our house for those who want to help out, but can't financially. We've had our home on the market for 6 months now. We've had a lot of showings, but no offers yet. We've had so much going on in our lives, fixing up the house has been the last thing on our minds. I think they're doing it this Saturday for anyone who would like to help out. Anyone interested can contact him at Derek@petermanhvac.com.

One month ago today...celebrated with a GREAT appointment

Happy one month Transplant day, Malakai!! I can't believe it's already been one month!

First of all...Malakai weighed in at 13 lbs 9 oz! He gained 1 lb 3 oz in one week!!! That's unreal :) So we are happy to announce, we have kissed his feeding tube GOODBYE!!! We couldn't be any happier. We actually took it out as soon as they said we could...didn't want to leave it in any longer than we had to! Praise God, he looks like a normal baby! Michelle, his nurse practitioner, couldn't stop squeezing his chubby legs. I think she was floored that he'd gained so much weight and chub!

We haven't heard back about his ultrasound or his blood levels yet. I'm assuming there will be no surprises there. It's all about tinkering with his levels right now. But I am pretty sure we will be getting to go home on Wednesday. It almost sounded like they may have been ready to send us home today, but the doc said he wanted to see us one more time. It will be so refreshing to get out of here! We love our apartment here, it's been so nice to just be together as a family. But I can't wait to get back to our normal life. Emma turned 3 yesterday (my oldest niece) and we weren't there to celebrate. Thankfully the party has been delayed so Makena can be there :)

We are heading to the park later this afternoon. Makena has gotten into quite a routine. She'll say "We're going to eat lunch, then we go to the park." Maybe I'll bring the camera along and try to get some pics of Makena playing and Malakai without that horrible tube taped to his face!!

It's been a great day. I am so thankful for my son's life and what a precious baby he is! If you've never met him, I want you to know he can light up a room with his smile. He's just a terrific baby! Thank you donor family...You will always have a special place in my heart!

Before and After

It's amazing what a new liver has done for Malakai. Check out the difference!

These were taken the night before his transplant:This was taken mid-April, he was basically skin and bones!

And after!!! Look how AWESOME he looks!!
If you're not already an organ donor, sign up to be one. If it hadn't been for an organ donor, Malakai may not have made it! I think about our donor family often and their angel that saved his life. I hope they know how much they mean to us! God bless them!

P.S. I'm happy to report the little girl at St. Louis Children's Hospital who was waiting for her liver recieved her "Gift of Life" on Sunday. She's doing well and recovering quickly! Praise God!

Thanks AT&T...Internet is BACK!!!

So we've been at this apartment for a month now, and I just figured out how to hook our computer to their internet! I'm so used to having wireless, I didn't even SEE the modem to hook it to the landline phone! lol

Malakai is doing well. He had a follow-up appointment this morning to have his labs drawn. He's showing slight signs of rejection, which is normal. All his liver numbers were a little elevated from his last labs on Friday. They've increased his Prograf (Tacro) and his Prednisone (his anti-rejection and steroid). His incision has been "oozing" from a little place since we were discharged last week and they're going to do an ultrasound Friday morning before his appointment. I'm not really concerned, it's really started to slow down and it's not red at all. I change the dressing on it twice a day and I've seen improvement. It looks like we'll be here in St. Louis until June 19th. That's 10 more days! I will be so excited to be home and for everyone to see how GREAT he's doing! He's a completely different baby than he was when we left.

We're allowed to take Malakai anywhere outside. I'm so thanksful for that! We all get stir crazy being in the apartment too long! So we decided to go to the St. Louis Zoo today. We forgot the camera, so we didn't get any pictures :( But I do have a few from my phone. Not the greatest quality, but at least you can see how GREAT he looks!!! Enjoy :)

Malakai and Mommy at the hospital the day before we left...He got a lot of looks in his sling!

Makena in her pool on our balcony. Great idea!

Doesn't he look AWESOME???

It's so good to be home!

We don't have internet at our St. Louis apartment, which is not fun! I have my phone that has internet, but for some reason it won't let me write on here! Larry (Josh's friend) came out today and brought his wireless internet adapter, so I am finally able to update!

It is soooo good to be all together as a family. Makena was a little confused when we got home I think. She asked a few times when we were going back to the hospital. He's doing great! He had an appointment yesterday and they said he was "perfect!" It is so good to be told your baby is perfect. Josh's aunt said "We always knew he was perfect, he just needed a little help from God along the way." I totally think that's the way to look at it. He's finally the healthy baby he is supposed to be!

They're still trying to figure out his Tacro (anti-rejection medicine) levels out. As he gains weight and his body changes, they'll have to increase/decrease the amount he gets. But other than that, all his levels are completely normal!!!

We've been going to the park every day. Good for Makena to run off steam, good for Malakai to get some fresh air. We've been taking our lunch and feeding him there. He's eating about 5 jars of baby food a day!! It's incredible to see how much he's eating. His weight was 12 lbs 6 oz at his appointment yesterday. I expected to see him weigh a little more, but I guess it will come. They've said a week or two more of the tube feeds at night and if he continues to eat like he is, we'll be able to get rid of it! I can't wait for that!

Well, hopefully I can update again soon. A few more weeks and we'll be home to Indiana. Pray that it's sooner than later :) God bless!

Home sweet home!! But my phone won't let me post anything! Details to come! We are home and all very very happy!!!!!!!

Going home tomorrow!!!

Tomorrow is the long awaited day! I am beyond excited :) He is doing fantastic! He's eating baby food from a jar, something he wouldn't even act like he was interested in last week. Our hope is a few more weeks on the pump and we can kiss that thing goodbye forever! He's defiantly showing that he's gained some strength and feels good. He's not wanting to sleep...at all! He's up more than he's asleep!

Rita and Brent came this weekend and I enjoyed having them here every minute! Josh and Brent took the older kiddos to the zoo Sunday and to the arch Monday and Rita stayed here in the hospital with Malakai and I. Today, Rita and i took them to the Science Center and Josh stayed here with him. The Science Center had an exhibit about transplant that was so interesting. I wish I could have paid more attention to it. Makena and Clay were running aroudn so it was difficult, but it had all the organs and a video of an actual transplant. Lung and liver were the two I watched (because of my history with dad and Malakai) and it was amazing to see. The liver is so much bigger than I'd thought!! And to watch the lungs inflate after they were in...it was so neat! And they had an interactive thing that kind of showed the steps to how they match an organ once it is ready for donation. That was pretty cool, too. It was kind of weird watching it, thinking, "My son JUST went through all of that!" It was so nice to feel normal again, and meeting Addison was GREAT! She's adorable, and such a sweet natured baby!

I am so in love with my baby boy. I am so thankful to God that he chose Josh and I to be his parents. He has been such a blessing to us and I pray that he makes a huge impact on others lives. He is our miracle, and he has forever changed our lives. I appreciate so much more than I did before. I don't get nearly as frustrated with the little things. I don't judge others like I did before. I am just so thankful that he is alive and well. Thank you for your prayers for my son. Without them, it's hard to say where we would be. I can't wait to come home so everyone can see how AWESOME he looks!

We don't have internet at our apartment, so I may not get to update as often as I'd like. I'm sure I could find a Starbucks or something :) But I will try to get on my iPhone or have one of my sisters update when we know more. Two weeks and we'll be home in Indiana!