Wednesday, December 9, 2009

Christmas is coming...

I took Malakai and Makena to get their pictures taken with their cousins. Six kids 3 years old and under, I think we got a pretty good picture. I didn't order any of my kids because I had a photographer come out and take their pictures. I don't have them back yet. Mandy (Josh's sister) took some as well so I didn't need to buy any. But here they are...

It seems like you prepare for Christmas, and BAM it comes and goes! I can't believe it's already December the 9th! We had our first snow a few days ago and Makena was so excited! I told her in June at Emma's birthday that when it snowed it would be her birthday. Nothing more was said and when she woke up she looked outside and said "IT'S MY BIRTHDAY!" I couldn't believe she remembered! I told her it wasn't today, but soon. She's getting really excited.

She's started preschool and so far, so good. She calls her teacher, Ms. Brittany, Ms. Murry. No clue where she got Ms. Murry from. Brittany said she's corrected her, but she continues to call her Ms. Murry so she just quit correcting her. She loves carrying her lunchbox in and I think she's well liked by her peers and teachers. She's a pretty outgoing kid, I can't imagine why she wouldn't be likeable.

Malakai had his first appointment with First Steps yesterday and he started crawling. Right then, on the spot. The therapist came in, and he started crawling on his hands and knees. Up until then, he was still army crawling. His favorite word and toy right now is "ball" He says it all the time. It's like he has a one track mind. He's constantly thinking about where his ball is. He's also started to "make a basket" with a small basketball and a plastic tub. He's getting pretty good at it. The basket is small and I'm surprised he's even able to do it. He's saying "MMMM" when you ask what a cow says. He's able to point to a few objects in a book. Sarah showed him a picture of him with his cousins and said "Where's Kena?" and he pointed right to her. He's just grown up so much in the last few weeks, it's incredible.
I just booked a cruise for Josh and I. It's a Caribbean cruise going to Grand Turk, Half Moon Cay, and Nassau. We will be leaving the kids with family and will be gone 6 days. I am very excited, but at the same time hestitant to leave him. I'm not really worried about Makena, she's been away from us enough that I feel like she'll be perfectly fine. Malakai has never been away from me more than about 8 hours. So I am going to be nervous, but I also know he'll be fine :)

Sunday, November 29, 2009

So much to be thankful for...

Im a little late for Thanksgiving, but I thought I'd say how much I am thankful for this year. It's incredible how much has happened in 2009, but I am so glad that everything worked out the way that it has. I think I have become a better mother than I ever would have dreamed. I am so thankful for my husband and kids. I feel so blessed. I'm thankful to our donor family. I think about them just about daily and the gift they gave my family. I'm thankful to have the family and friends that I do.

Malakai is just growing up before my eyes. It's amazing to watch his mind grow. He's starting to say words. He started saying "baby" then "Papa" now he's saying "ball" I was looking at a book with Makena and Malakai last night and there was a picture of kids playing basketball. I asked him "Malakai, where is the ball??" And he pointed to it with his pointer finger. He just seems like he shouldn't be able to do this yet! I know he is 14 months old, but I just feel like he's so much younger! I couldn't be any more proud of him. With all that he's been through, you'd never know it. People are amazed at how sweet his personality is. People who don't even know him can tell that he's a very laid back, sweet kid. I just love him!

Makena starts "school" tomorrow. Josh and I have made the decision to enroll her into part-time daycare. We think she needs the social aspect of being with other kids. I am going to start working for the company some, and so we decided to enroll her into a preschool/daycare. We'll have the option of taking her everyday, but probably will only take her 3-4 days, part time. Malakai will be going to the office with me, so we'll see how that goes. The first few days have been ok, hopefully they continue that way.

I am going to attempt to get my Christmas tree up tonight. We'll see how that goes, it's already almost 7 and I still have to get both kids put to bed. So hopefully, hopefully I can get that done! I got almost all of my shopping done on Black Friday. Rita and I met at 4:45 am and shopped until about 3:30. We had a blast and I was so thankful to get alot of it done! Now to get the tree up, wrap presents and plan Makena's birthday :) I can't believe my baby girl is almost 3!

Wednesday, November 18, 2009

Few Trick or Treat pictures

Here are a few pictures from Halloween. Kena was a "kitty princess" and Kai-Kai was a cowboy. She looooved going trick-or-treating. She'd walk right up to the door, knock, step back and wait. She wasn't shy about digging into the bowl to get some candy and skip back to us. Daddy kept Malakai nice and warm in a blanket and then we had a great meal at Nana & Papa's house, complete with more candy!

My two cuties all dressed up
She could hardly wait to go!!

Up fresh from a nap and looking handsome as usual

We decided to take the kids to the zoo the day before Halloween and were surprised to arrive and see they were doing trick-or-treating. She no longer cared about seeing any animals, it was all about the candy! HAHA...Here's a cute picture I got of the two of them together

A beautiful tree at Sarah's house that I wanted to get our picture taken in front of but by the time I made it there, the rain had taken most of the I had to kneel for the picture, but turned out OK, I guess :0

Gonna try this one more time...

I have literally tried to update my blog at least 4 times and for whatever reason (not sure if it's Blogger or my computer) they never seem to post! I don't even realize it until I go to make another blog and see that my older post never showed up. Very frustrating...

Anyways, I haven't updated in what seems like forever. Malakai is growing and changing every day. He's cutting jaw teeth right now, bless his little heart. We didn't even see them until tonight and he was brushing his teeth and started to cry. I looked in his mouth while he was screaming and see THREE new teeth. Poor baby :( Two jaw teeth and one next to the teeth that are already there.

Let's see, what else is new. First Steps came out yesterday and he has qualified for both developmental and physical therapy. I really don't think they'll have to come out much at all. He just needs some muscle stregthening and he'll be good to go :) He's learned how to get onto his hands and knees and push himself from that position to sitting. Next will be learning how to pull himself up and then start coasting along furniture. I'm not at all worried about him. He's had alot of hospital time and I know he will catch up! He loves to throw a ball and lately he's been "cleaning up" It cracks me up! I'll give him a basket and about 6 balls and he will proceed to pick each one up and put it in the basket. He's also been saying "Don't" and "Stop" As well as throwing up his arms when you say "Touchdown" and he can "show you his muscles" It's so cute to watch him grow into a little guy and away from his baby tendencies. I think we're going to be getting a hair cut soon. His length is getting a little out of control, but I really don't want to see his soft baby hair go yet. So we'll wait a little longer :)

Makena, Malakai and I all got our H1N1 shots today. It gives me a little peace knowing we have the vaccine, but also I worry about the lack of time in studying it all. It's so hard, but I'm at peace with the decision! Both of the kiddos were troopers. She got real nervous when we went into the room, but as soon as it was over the lady gave her a sucker and she was fine. Malakai was the same. He cried, saw the sucker and was happy again :) I have such brave kids!

Malakai had a few liver friends, Eden and Eli, recieve their "Gift of Life" on November 10. They're both doing well and I am so glad to see they no long have Biliary atresia and are on the road to being normal, healthy kiddos :) Keep it up, little ones! I can't wait to see pictures of chunky, healthy babies!!

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 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 here are some pictures from my Facebook page...

Here are the pictures from his birthday party:

Monday, September 28, 2009

Back in the hospital...

So I wrote out Malakai's first year the other night and it vanished, so I am going to attempt to re-write it tonight. I am sitting at Riley, once again, with a sick baby...well, he was sick. He's better and we're hoping to go home tomorrow. I will go into more detail with that later. This is a post more for the future to remind me of how I am feeling. It's a little on the rambling side and sometimes it seems as though I'm not really going anywhere...but bear with me. It's late and I've been in the hospital for 4 days :)

I found myself, on his birthday, really thinking the past year. The day he was born, I fell in love with a little baby boy instantly. I didn't feel that way with Makena. I think with your first, it's all so new and you have no idea what to expect. With Malakai, he was born and I just adored him. He was beautiful, perfect and seemingly healthy. Fast forward 3 1/2 weeks and I noticed the yellowing of his eyes and skin. I didn't know that jaundice developing after birth wasn't normal. I called his pedi office and they told me to bring him in that night for blood work and scheduled an appointment for first thing in the morning. His billirubin levels were elevated and so they sent us back to the hospital for a more detailed blood test. That showed "hyperbilirubinemia" and we were sent to Riley.

We were there bright and early with many tests scheduled, one right after another. I don't remember much about the specifics of the tests, but I do remember the first test, they had him basically taped to a table while this machine looked inside to check his bile flow. I remember thinking, "Is this really that serious?" My baby was strapped to a table, unable to move, and I felt helpless. The first time I would feel this way, but certainly not the last. They tested him for things like cystic fibrosis with ultrasounds, etc. The doctor told us they suspected (after all his tests) that he may have Biliary Atresia. This was the first time we heard those two words that have forever changed our lives. He said this was the "worst case scenario" and we had to rule this out first. Biliary Atresia is when a baby is born, the bile ducts between the liver and intestine are either not fully formed, or not there at all. He went in at the end of October for a liver biopsy and this showed the doctors that he needed to have another operation. The only way to 100% determine if he had BA was to go into the operating room, open him up, and check.

November 6th was the day of his surgery, called the Kasai. He indeed had BA and so they connected his liver to his intestine to create the bile ducts that were missing. They also removed his gall bladder, which was very small and under developed. He was in the hospital for only 5 days and we took him home to recover.

Slowly, the yellow started to fade and he looked like a normal, healthy baby. We hoped and prayed that his Kasai would work and he wouldn't need a liver transplant. Something like 85% of patients with BA who have the Kasai will need a liver transplant before the age 20. 50% of those will need a transplant by the age of 2. So we knew this was a possibility, but prayed for the best.

He went back for labs every few weeks and really looked like he was doing well. His bilirubin level was dropping (slowly, but dropping) and he was thriving. In January, his belly started to swell a little. After a trip to the ER and a few nights in the hospital, we were sent home on a diuretic, in hopes to pull the fluid from his belly and he would pee it out. It seemed to be working at first, but over time his belly was getting bigger.

In February, we took him back to the ER. His belly was increasingly getting bigger and he'd stopped eating well. When we got in, his labs showed his sodium was dangerously low. The doctor told us that most kids with a sodium of 112 would be having seizures. Thankfully, he wasn't in that bad of condition. It did, however, send him to the ICU. He was watched there for 3 days and sent to the regular floor. Trying to get his sodium in line created another problem, his swelling belly. His belly got so huge, I wasn't able to hold him and he looked 9 months pregnant. At this point he wasn't eating anything by mouth, it was all going in his feeding tube. After about 3 weeks at Riley, we had made the decision, after meeting with the entire GI team, that it was time to have Malakai evaluated for transplant. We'd initially decided to go to Cincinnati Children's Hospital. They couldn't get us in for another 10 days, but St. Louis could get us in the next day. So we decided to go there, and I'm telling you what, that may have been the best decision we made! We have loved being there!

Anyway, he was flown out to St. Louis on St. Patricks Day and after 8 days, his belly was much smaller and we were discharged. He was officially listed for liver transplant on March 21st and sent home on a feeding tube. He was very skinny, but the doctors were telling us he needed a transplant and probably didn't have much time to "fatten" up before. Over the next month, he declined quite a bit. He was very thin and didn't have much energy. The whole time though, he was very happy.

Malakai recieved his first call for a new liver on April 24th. Josh's mom, Cindy, was undergoing tests to see if she could be his living donor at the time. We didn't have the results back yet, and without knowing if she could be a back up, we made the VERY difficult decision to turn down the first liver. After losing my dad after a double lung transplant, I felt like I NEEDED a back up. May 1st, he received his 2nd call. We were told it was a 17 year old donor and we packed up our car and headed to STL. We got there, all set up, and had a tentative surgery time of 8:30 pm. At 8:30 the surgeon came in and said the liver wasn't splitable and wouldn't fit Malakai's tiny body. So we left the hospital, stayed in a hotel, and went home the next day. He had an appointment May 6th, so we planned to come back. We also found out that Cindy was NOT a match.

May 6th, his albumin level was low and they told us we needed to stay in the area the next three days for IV albumin. Josh went and got us an apartment and we decided we were going to stay in the area until transplant time. Having drivin out the first time and it not working out, really rattled us. They told us "He needs a transplant, and he needs one soon" I could hear the desperation in her voice. We were basically told he only had weeks to live on his old liver. We had MANY people that we didn't even know, call and offer to get tested to see if they were a match. I was humbled to see that many people step up to save my sons life. I didn't even know some of their names, but I am forever grateful for their generousity. Then, Sarah, my twin, called me that day and told me our blood type was O+, which was Malakai's. I couldn't believe I never got my blood tested to see if I matched him. So I called and started getting my tests scheduled. After multiple tests over the next 2 days, we were scheduled for transplant on May 18th. I couldn't even begin to truly think about what was going to happen. What if I didn't make it? What if he didn't make it out of the surgery? What will Josh do without me? I knew I couldn't think about these things because if I did, I would not be able to make it the next few weeks. I would do whatever was necessary to save Malakai's life.

It turned out I would never need to make that decision. We got "The Call" on May 10th. We were told the donor was 10 years old and the new liver would be cut down to fit his body size. The surgery lasted about 6 hours and I was so relieved when the surgeon walked out and said it was over! I knew the next few weeks would be difficult, but my baby was ALIVE! The surgeon said Malakai was the skinniest baby he'd ever transplanted. He was skin and bones. It brings tears to my eyes to really think about how thin he'd gotten. We were inpatient for about 3 weeks and stayed in St. Louis another 2 after he was released from the hospital. It was nice being in STL as a family and not in the hospital. We went to the park almost every day and just enjoyed having our little baby boy back.

We were so grateful to the entire staff at St. Louis Children's Hospital. We felt as though Malakai was truly cared for there. They wanted to do their best for him and see him thrive. I can call and know that they know who I am. He is not just another patient, he's a child. I know they love him...and that makes all the difference in the world!!

Since the transplant, Malakai has done well. He's had a few bumps, one major. A bowel obstruction that led to a major surgery. All in all though, I can't complain. He is alive, he is thriving, and best of all, he has a healthy liver. One year ago, I would've never imagined that I would have had the strength to endure the year that I have had. I do know, there's nothing I can't handle. God has given Josh and I both the strength and endurance to take whatever came our way.

I am the mother to two of the most beautiful children in the world. Everytime I look at Malakai, and he smiles, it is all worth it. I would do anything for him to be healthy. I pray that his life is full of normal kid stuff. When Makena says "Mommy, will you play with me?" or "It's a sunny day!!!" when she wakes up in the morning, I am reminded at how blessed my life has become. My wish is for both of my kids to be happy, successful, compassionate, faithful, God-loving individuals.

Malakai got a little bug sometime before his party and he became severly dehydrated throughout the week. We ended up in the ER on Friday and it's now Monday. We thought we were going to the ER for IV fluids and here we sit waiting to be discharged. I guess I am just reminded that he is immunosuppressed and he will require a little more medical attention when he gets a sick. I think it has also taught me to be a little more cautious about washing both mine and Makena's hands often, to wash tables and high chairs down at restaurants and not to put him in a shopping cart. I also need to keep Makena as healthy as can be, so she won't give him anything.

I realized the other day, he's had at least 8 hospitalizations. He's been in the hospital every month since he was born except for December, April and July. He has stayed roughly 80 nights (I have definatly lost count) in the hospital. And still, he is all smiles. What an inspiration and role model he has become to me and many others!

My little baby, who is quickly turning into a little boy, is growing up entirely too fast. I was watching him play yesterday and he is starting to move cars as though they are driving. He's also learned to throw a ball. He's learned to "fake" a laugh and also a cry. I am just beyond delighted to see him growing up and learning new things. He's taught me so much in the year he's been here and I am blessed and honored to be his mommy.

Thursday, September 24, 2009

Happy Birthday, Malakai!

I literally just spent the last hour writing out the thoughts and fears and events of Malakai's first year and how I felt about all we have been through, and it erased. Just like that, its gone! I am honestly in tears right now. I will have to do this again tomorrow. I want to remember his first year and I know further out we get, the memories will fade. Ugh!

Today, my baby turned one! I have much more to say about it, but this will have to wait. It's getting late and he's not feeling very well. So I know he may be up early and tomorrow will be a long day. I just have to say how thankful I am that he is here and alive. One year ago today I fell in love all over again, and I think I've done it everyday since then. Malakai is the light of my life and I am so proud to be his mommy. He has been through far more than any child should have to endure and he's done it with a smile on his face.

Happy Birthday, Malakai. You are TRULY A MIRACLE! Thank you, donor family, for giving our little boy the chance to grow up and live a normal life!

Sunday, September 20, 2009

Big birthday celebration!

Malakai's party turned out great! He woke up not feeling really well, and actually threw up. I told him he wasn't allowed to be sick on the day of his party. After a few things went wrong, things finally started to settle down. Josh built a big bonfire to light at the end of the party when it started to get cold and someone threw a cigerette in it and it caught on fire. The smoke combined with the wind blowing super strong made it almost unbearable to be outside! But eventually, the party I had been planning for a month finally started to feel like it was going to have a great turnout. The bouncy house and pony (yes, the pony DID show up) were a hit and everyone had a great time! Malakai's appetite has been almost non-existent the last couple days so he didn't get to smash his birthday cake like at most 1st birthday parties. I was afraid the amount of sugar would make him sick. So we will be doing that on his actual birthday. He loved the pony and actually like riding! He was making horse sounds and bouncing as if to make the horse go! It was too cute! All in all, it was a great party. Worth the time I spent planning it, but I am glad it is over! He got alot of great gifts and it was wonderful to see everyone. Thanks again to all that showed up and celebrated his life with us!

My computer is acting up, I was trying to upload pictures but for whatever reason I can't get them to load. So I will try again tomorrow!

Thursday, September 17, 2009

Trying to play catch up...

I haven't been too great at keeping my blog updated! I have had so much going on these last few weeks, I haven't had time to sit down and write! Malakai's party is quickly approaching, less than 2 days away! I have been working daily to get things done. We decided on a taco bar theme and hopefully we bought enough's so hard to tell how many people to expect! I had a pony rented and we've had a serious mix-up with it. So we may have a pony, we may not. I was NOT happy with the pony-guy. I said "You don't understand how important this party is. I spoke with you a month ago and you said it wasn't a problem, then I get an email 5 days before the party and you don't know if you're going to be able to 'work it in?!" We shall see! We will have a bouncy house and plenty of tacos and cake :) I am really looking forward to seeing people I haven't seen in awhile, and alot of people who haven't had the pleasure of meeting Malakai!

I weighed him this morning, he was 17 pounds 2 ounces. I wrote a few weeks ago and said he learned how to throw toys from the stroller, now he's learned to throw food from his highchair. I will put 5 Cheerios or Goldfish, and he will pick each one up individually and throw them off. It's cute, but messy! He's really starting to jabber. He's trying hard to talk, and saying "sssss" Like sissy...So he's said "dada" and now "sisss" but no Momma...It will come, someday before he's 5 :)

Makena has successfully learned how to ride her tricycle. It's so cute! I think she would've learned a long time ago, but we have no where to let her ride...she's learned how to ride around the hot tub on the deck and there is very little room. If she misses the turn, she's off in the grass, 12 inches down! So I am very proud :)

Josh and I will be celebrating 6 (yes, SIX) years of marriage on Sunday. That makes me feel so old!! We have been through so much together. My dad passed away 9 days after we got married, we had a miscarriage, then an ectopic pregnancy that nearly took my life, then Makena was born with some issues that had us terrified and all that has gone on with Malakai. I do know it has made us stronger as a couple and I am so thankful he chose me as his soulmate. Remembering back 7 years ago when his dad introduced us and I was so embarassed I turned around and left, to now...2 beautiful kids later. All I can say is, I am truly blessed. Happy Anniversary, Josh. I love you!

Tuesday, September 8, 2009

Ah, poop in the tub!

After a very messy dinner of spaghetti, I put both kids in the tub. They were both enjoying themselves and playing well...I was going to let them play as long as they liked because they were content. Then I looked in the tub and Malakai had just pooped! I yelled for Josh and we grabbed both kids out...Makena thought it was hilarious!

On a lighter note, Malakai has started to "crawl"!! He's not up on his hands and knees, but he draws his legs up under his body and pushes off. He definatly gets where he wants to go and is starting to get into everything!! The joys of a baby on-the-go! It won't be long before he's crawling out of the room I put him in!

He's doing very well, no issues to report! He's gaining weight and is happy as can be. He's also sleeping through the night!! I couldn't be any more excited about this!

I have been working daily to get his party planned. It's Saturday, September 19th from 3:00 - 8:00pm. It will be an open house style party. We'd love for everyone to stop by and celebrate with us, even if you can only stay a little while. Gifts are not necessary, celebrating his life with us is enough! It will be out at our family farm and will be complete with food, cake, a bouncy house, pony rides and lots of fun! For directions, please email me. If it's raining, it will be at our home...but we're praying for beautiful weather that day! I can't believe he is going to be one! This has been one very long (yet short) year for us...I am just so thankful that Malakai is here, alive, and thriving! What more could a mother ask for on their child's birthday?

Tuesday, September 1, 2009

Another trip to the ER

After a day of quite a bit of bleeding, I called up to St. Louis and had the on-call GI doc paged. I told him he'd been bleeding where his Broviac was removed and he started to develope a knot under his skin. He said he would feel better about him being seen. Rita and I took him up to Riley around 5 pm on Saturday. It really got pretty gross and I was glad we took him up there. They drew a blood level and his CBC was slightly elevated but nothing to be concerned about. We went home around 10:30 pm and were told to just watch it. Thankfully, the bleeding stopped and he is doing just fine now. We gave him his first Broviac free bath; he and Makena both loved it! He just splashed and splashed. He looked so different after because his hair got really clean! Sponge baths just don't do the same! So all in all, he's doing great and I couldn't be happier. He's really starting to babble and just seem grown up! Makena is really starting to calm down alot. She seems to be behaving more as well. She's potty-trained and having very few accidents! I am so happy about this! I really hoped that she would be by the time she was 3, and we're just a few months shy! That's about all on this update. I have a ton to do for Malakai's birthday party!!

Wednesday, August 26, 2009

Last night was terrible, today was GREAT!

We arrived in St. Louis around 8 pm...Josh took Makena swimming, which she loved! After about 30 minutes we headed up to our room to get settled for the night...that took about an hour and a half and finally around 11:30 pm, I layed down. Malakai wasn't allowed to breastfeed past midnight, water only until 5:30 am, nothing after that. So he woke up at 2:20 am and cried and cried and cried until about 4:30...then I woke up at 6:15 to shower and get ready for the day. So he was exhausted (and so was everyone else!!) He cried the entire time I was getting ready...broke my heart because he didn't understand why he wasn't getting to eat. His appointment was at 9 am, we were told it would be about an hour. At 9:10 the surgeon came in and said he was all done and did great! 10 minutes!!! He took forever to come out of the anesthetic. We've never been allowed in the recovery room before, but he was OUT! We'd pick up his arm or leg and it would just flop on the bed. It took him about 1 1/2 hours to finally wake up. He just completly snapped out of it! He started to cry, I nursed him, and got him up to dress him and he just started to babble and smile! It was great :) He's a little bruised and is still bleeding a bit but otherwise...THE BROVIAC IS GONE!!!!! He's allowed to take a bath on Friday! I've never been so excited to give my baby a bath! He ate like a champ at both lunch and dinner and is now sleeping soundly. Hopefully he sleeps well tonight!

Tuesday, August 25, 2009

New pictures

My sisters, mom, and I took the kids to Brown County a few weeks ago for Mom's birthday. It's a big state park in Indiana. We got a cabin and the lodge had a big indoor water park. The kids had a blast. We decided to take their pictures before we did anything, while they were all in good spirits and before they could get dirty :) They turned out GREAT! I don't know why they are so small...all of them are small except for the one of Makena...Anyways, here's an idea of what we were able to get!

Here's the three older kiddos: Emma, Clay and Makena

Beautiful picture of Makena and Malakai

All 6: Emma, Makena, Jack, Malakai, Addison and Clay

Our little miracle, Malakai :)

Our beautiful princess, Makena :)

Broviac removal tomorrow!!!

First of all, we're heading to St. Louis tonight to have his Broviac removed tomorrow! I am so excited!! One more step in the direction to make him normal! Makena will be so excited to get to take a bath with him. She asks almost every time she gets in the tub if Malakai can get in with her. And hopefully it will make bathtime easier for me, although I realize it could make it more difficult! I can totally see her trying to take him under (being sweet about it though! LOL)

Secondly, Malakai is doing FANTASTIC! He's back to being his normal self and is babbling like crazy. He's really starting to act older and it's so awesome to see! He's starting to push his knees up underneath himself and trying to scoot forward. It's hard to give him much time on the floor because Makena will run all over him if I'm not in the room. So, I think if he was allowed a long amount of time on the floor he'd be crawling alot sooner than he is. He's eating great, and starting to sleep better. Hopefully going into the hospital tomorrow won't mess him up!

I've started to plan his birthday party...It is going to be September 19th (he turns 1 on the 24th!). Everyone is invited. I know alot of people prayed for him and us during his transplant experience and I would like anyone and everyone who prayed for us to be a part of his big day. We're going to have a bouncy house and a miniature pony for the kids. Lots of fun and celebration to be had that day :) Please comment or email me if you think you'll be able to make it. I am going to try and get an estimate of how many people will be there! We sure have alot to celebrate!

We've updated My sisters and I pulled an all-nighter a few nights ago and stayed up until nearly 4:30 am making hairbows, only to be woke up at 7:30 by the kiddos. We made some extremely adorable Christmas and Halloween hairbows. Remember, we can customize bows to match specific outfits. We're also now selling hairbow holders, stay tuned for pictures of them...they're so cute! Please check it out!!

Thursday, August 13, 2009

We are home!!

I will do my best to sum up the events of the last few weeks without writing a book!

After my post about his slight fever I took Malakai to his pediatrician Monday (August 3rd) and after looking in his ears she determined they weren't red enough to warrant a fever and just to be safe sent us to Riley. They ran some blood cultures and swabbed his nose to check for anything viral. Nothing showed up and it looked like we'd go home on Thursday (we had to wait 48 hours for the cultures). Then Wednesday he decided he was going to stop eating anything. He'd stopped eating real food Monday, then stopped breastfeeding on Wednesday mid-day. By Wednesday night, his stools were very loose and a greenish color. Thursday he started to spit-up. It wasn't a large amount, but he's start to gag a little bit, then throw up. So I was concerned about what could be causing this. Then he started to have high blood pressure. He'd never had a problem with this before so they had to figure out what was causing it. They said it was high, even for an adult. It was in the 130's-140's/90's-100's. It's supposed to be under 110/70. So that was concerning and the docs in St. Louis asked for a liver scan. Then early, early Friday morning he started vomitting bright green. And I mean, BRIGHT green. So they ordered X-rays and a full abdominal ultrasound at 9 am. About 10:15, after talking to Penny (his transplant coordinator) she said worst case scenario, he had a blockage in his bowel and would need surgery. Sure enough, after reading the ultrasound and Xray, they decided he would indeed need surgery.

They lifelined Malakai out to St. Louis at about 2:15 pm, only four hours after finding out he'd need surgery. His blood pressure was pretty high at this point and he was acting really lethargic. Not really moving much and not caring when they were messing with him. That scared me pretty bad...knowing he was getting ready to get on a flight and wasn't looking good. I was supposed to fly with him and once again, they got into his room with the stretcher only to find out I couldn't go because I didn't have my driver's license! This happened when he was airlifted to STL the first time. I couldn't go that time because there wasn't room. So I had it in my mind that I was flying with him until the transport team arrived. I guess lesson learned, grab my purse ANYTIME I leave the house. That was the only time I broke down during all of this. I haven't cried in awhile. But them telling me my son needed an emergency surgery and then taking him from me was more than I could handle! I kissed him on the forehead and he was straining his neck to see me as I walked away. I had his stroller in his room and literally pushed past the nurses to leave his room with an empty stroller. I was crying and didn't want to see him being taken away. I am feeling the same emotions all over again!!

So he got to STL and they did their own scans to look at there. He was taken into surgery around 10 pm and it took a few hours to complete. He did very well. They said after his old liver was taken out, his diaphram was left a little thin due to cutting it away from his body and because his new liver was a little too big it had to be put in a different place than his first liver. Over time, his diaphram got a little hole in it. So his intestine was able to move up into the small hole, creating a hernia and therefore creating the obstruction. That's why he'd stopped eating, starting having diarrhea, and eventually throwing up bright green bile. They put a small skin graft over the hole. He stayed two nights in the PICU and was sent to the regular floor on Sunday afternoon.

He had a chest tube in and as soon as they took it out, he was so much more comfortable. The surgeon (Dr. Earl) that came in to remove the tube said that he was the toughest kid he'd ever removed a chest tube from. He didn't even flinch!! He said "I would've been screaming if that were me!" So needless to say, I have one tough little guy :) He also had an NG tube to suction the contents of his stomach out, but he decided to remove that on his own :) He started to breastfeed again and was pooping again so they sent him home!

I was reminded again how much I LOVE the team at St. Louis Children's Hospital. We are so blessed to have found them and I can't say enough wonderful things. Anyone looking for a liver transplant team, I would HIGHLY recommend this facility and team! We trust them all with our son's life, with no questions about why they do what they do. I feel like each and every person on their liver team truly cares about Malakai. I feel like they do their job to save lives and they truly care about their patients on a personal level. And the nursing staff is wonderful as well. Everyone was so excited to see him!(Don't get me wrong, I love the Riley nurses as well! Just not thrilled with the doctor staff...) Dr. Lowell, his transplant surgeon, couldn't get over how great he looked! He just went on and on about how much weight he'd gained and how he didn't even look like the same baby!! He said he wanted a before and after picture because he just looks that GREAT!

Ok, before I make this a book like I promised I wouldn't do...Thanks to everyone who prayed for us. This 10 day hospital stay was the first I did mostly by myself, so that was a challenge but now I know I can do it! He's getting older and realized more than he ever has about what was going on. So please continue to pray for health over Malakai and that he is over this stage and can go on to live a normal, healthy life!

Sunday, August 9, 2009

Surgery was a success! (via Rita again)

Malakai's surgery to remove the obstruction occurred on Friday night. It took around 2 hours. They were able to go back in through the scar from his transplant, and they discovered that the obstruction was from a spot where his original liver was attached to the inside of his abdomen. When they removed his liver, this created a small hole, and his intestines worked themselves into this hole. In essence, the hole squeezed shut his intestine. (I'm sorry if these details aren't 100% accurate, I'm going by what Josh and Carah have told me in our brief conversations). They also discovered a small hernia and fixed that during surgery as well. He went to ICU after the surgery, and has been on a high amount of pain meds. They have begun to reduce what he is taking, and because of this, he's beginning to act a bit more like himself. He will be leaving the ICU today!! Yea!! Carah will be able to use her cell phone in his room once they have left the ICU, so she'll be more able to be in touch with us back home. Continue praying that he recovers quickly!

Friday, August 7, 2009

Obstructed bowel--to St. Louis again.

After a second rough night of vomiting, Malakai's belly began looking swollen again. Riley decided to do an ultra sound and x-ray, and noticed what they thought was an obstructed bowel from surgery related scar tissue. Once this was confirmed, Josh and Carah decided to have Malakai transferred out to St. Louis to do the surgery necessary to fix this. Malakai was life-lined, and Josh and Carah drove to meet him. The surgery will take place this evening. More to come...

Thursday, August 6, 2009

Malakai's update via Rita

Carah and Malakai were sent up to Riley on Monday due to Malakai running a temperature. Initially it was thought he might have an ear infection, but that was quickly ruled out. After blood and urine tests, nothing of real significance was found, but he was still experiencing some not so wonderful, vomiting, diarrhea, lack of appetite, etc. The doctors have indicated that they believe he has some sort of a stomach bug, but that it has hit him harder than it would most babies due to his compromised immune system. They are treating the symptoms right now, hoping that he will regain his appetite soon. They are waiting for him to remain fever free, and resume breastfeeding/table foods before he will be discharged. So, like always, we wait...

Sunday, August 2, 2009

Had our first post-transplant scare...

Malakais appetite lately has been down. He's not been really interested in eating and he's been drooling alot. I chalked it up to teething and didn't think much of it. Yesterday he was crabby and wanted to be held as much as I would hold him! We had a showing on the house at 2:30 and so I had to clean and couldn't hold him as much as he wanted. He was cranky, but was managable. I put him to bed early and he woke up around 2:00 am to nurse. When I picked him up I noticed he was really warm. I asked Josh to get the some Tylenol and the thermometer. It was 100.2 F (37.9 C) I called the doc on call and he said if it reached 38 we'd need to take him to the ER but to watch him overnight and as long as he was able to sleep we could wait until morning. Long story short, all day today he's been off and on with a low-grade fever. When he was discharged from the hospital after transplant, we were told to call if his temp reached 38 Celcius (100.4 F). With his Broviac still in, a fever could be a sign of an infection, so they always want to double check to make sure this isn't the cause of his fever. His temp never got that high, thankfully...but it hung out around 37.9 C (100.2 F) alot today. I spoke with the on-call GI doc about four times and he told me to get him into his peditrician tomorrow and as long as he doesn't reach 38 it'll be fine to wait. He's been tugging at his ears and drooling like crazy so Josh and I think maybe it's teething or ear infection. Either way, we don't believe it has anything to do with his liver. We've been giving him Tylenol every 4-6 hours as needed. As soon as it kicks in, you can see a huge change. He'll start to babble and smile. Then a few hours later, he's back to being fussy and irritable. Hopefully by morning he'll feel alot better. He didn't really eat much at all today. Drank about 4-6 ounces of juice and breastfed, but really didn't eat anything solid. Again, hopefully tomorrow will be a better day. Having a simple childhood illness will be totally different with Malakai than with Makena or any other healthy child. I guess we saw a glimpse of that today. I'm sure with time it will get easier, but I kept thinking the worst all day. Say a prayer for Malakai if you read this.

Thursday, July 30, 2009


He's now saying "Dada" new as of about 10 minutes ago! It is so sweet to hear :) We have been working with him, saying all kinds of noises over and over again trying to get him to repeat us. He said Nana the other day (which is what we call Josh's mom) but it was one time and not again since. Today, in his swing, he was just babbling...Dada, dada, dada, dada...over and over again! Sooo cute :)

We've scheduled his Broviac removal for August 12th...three months to the day from his transplant. I'm ready to get rid of it and give him a normal bath! That means no more weekly labs...but now he'll have to go once a month to actually have blood drawn, something he hasn't had done since beginning of May :( Not looking forward to that, but definatly looking forward to getting rid of the Broviac and not having to flush it daily and worry about him yanking it out or getting an infection because of it.

Makena had her first gymnastics class yesterday with her cousin, Emma. She's still a little young I think to truly get the idea, but she had a good time. I think once she gets used to the structure, it will be alot more fun. They had a long trampoline that I think was her favorite part. Each of the kids got a turn jumping from one end to the other. She was definatly the most outgoing and energetic one there! Here are a few pics of her first class.

Friday, July 24, 2009

Happy 10 Months, Malakai!

I can't believe he is already 10 months old! It's been a very long, and very exciting 10 months. We have one very handsome, very healthy baby. We couldn't be any happier! To think where he was a few months ago, and where he is's amazing. Every month is a milestone. We will have something GREAT to celebrate on his first birthday.

Speaking of milestones, he started clapping today. All those hours of "patty-cake" have payed off :) and he's very proud of himself. He's also starting to "inch" across the floor. He'll reach as far as he can with one arm, then switch...reaching as far as he can with the other. He doesn't get very far but it's so cute to see him moving! It won't be long and he'll be all over the house!

And I'm proud to say, his menu has finally expanded to include something other than lasagna and spaghetti! I'm starting to get tired of people asking me if "he's still a little jaundiced" His face and hands have an orange tinge to them because the base of the meals he was eating twice a day is carrots! Haha! It was actually starting to turn his skin orange because he was eating it so much! He's now liking sweet potatoes with turkey and peas! Hopefully soon he'll be moving off baby food and starting to eat table foods more.

Tuesday, July 21, 2009

Having a great summer!

We are having a blast getting out of the house and enjoying Malakai as a healthy baby! We got some good pictures this weekend at a family reunion. It was freezing for July...we were all dressed in sweatshirts and jeans! Is it seriously July?? A good break from the heat, but glad it's warming up again.

A normal person looking at him may think he's small for his age, but I think he's a chunky little guy! I love watching him grow! Looking back at where he was just 2 months ago, it's amazing how much he's grown! I can't believe he's almost 16 pounds!! Here's a few pictures from this weekend!

Mommy, Makena and Malakai
Makena being Makena...Sassy but sweet!
Aw, shucks!

Look at how chunky he is!

I talked to his transplant coordinator (Penny) and she said they're going to schedule his Broviac removal for the 10-14th of August..I CAN'T WAIT!! I changed the dressing on it today and his skin is so sensitive, it's all red under the tape and looks so irritated. We are going up to Michigan, just the kids and I with my mom, sisters, nieces, and nephews the following week and I'm excited he'll be able to get wet!

We went to the zoo today and I forgot my camera. Thankfully, my sisters brought theirs so hopefully I can get some pictures posted later! Makena rode a horse for the first time. She loved it, wanted to go again as soon as she got off! LOL They have a little water park where water squirts out of the ground...not big at all but the kids all had a blast!

Thursday, July 16, 2009

No more steroid!!!

Penny (his transplant coordinator) called today and said all of his levels were GREAT and he no longer needs his Prednisone!!!! He HATED his prednisone, it went down super hard and was very hard for him to swallow! So that's exciting, plus it is one less medication each day and one step closer to being a "normal baby" He can now go in public places, which is something I took for granted before. Although, I have saved alot of money because I can't just run to the store!! Great news :)

Wednesday, July 15, 2009

Another good appointment!!

A few things to update, but nothing bad! He's doing FANTASTIC!! We had First Steps out yesterday to do an evalution to see if he was eligible for physical therapy. After watching him and asking a ton of questions, they determined....He didn't need their services!!!!!! He's doing THAT well! He's only behind because of his hospitalizations, and they said he's technically not behind. He's only not doing things because he hasn't had enough time to. So they're going to come back out and re-evaluate if we want them to in 3 months!

Today we went out to St. Louis for his first check up since leaving. They were all impressed with his progress. His Tacro level on Monday was 9, I'm assuming it isn't much different now, but we haven't heard back yet. He weighed in at a whooping 15 pounds, 11 ounces! He is a chunky, chunky baby! He loves to eat and it shows :) They want to see him again in a month and then they'll take out his Broviac (central line). They've decreased his steroids to a very small dose and it looks like his next appointment, they will get rid of all but three of his meds!! I am so very pleased with him and how well he's doing. I couldn't be any more proud!!!

Saturday, July 11, 2009

Super Cute Hairbows!

Hi friends!! My sister and I have recently started making hairbows for our little girls. After several requests from friends and family, we have decided to start making them and selling them to others. If you have any little girls, or know anyone who might be interested, please feel free to forward our information along. These hairbows are perfect for newborns, as well as toddlers, and even older girls. All of the bows come on non-slip alligator clips that can be attached to one of our crochet headbands (perfect for infants and toddlers), or directly into her hair.

Prices for our current inventory are:
$2.00 for crochet headbands (when purchased with a bow)

$3.50 for large bows and flowers (or 3 for $10)

$2.00 for small bows (or 3 for $5)

We can arrange local pickup, or will ship for an additional $2.50.

Here is a link, these are only samples; hairbows can be made in any color combination/size you would like. If there is something specific you are looking for, feel free to ask. We can probably come up with something to meet your needs.

Check out our blog at!

Contact us via email at

Carah (and my sis Rita)

Friday, July 10, 2009

Happy Birthday, Josh!

It's Josh's 30th Birthday! Happy Birthday!!! I took Makena to the store with me and let her pick out Daddy's cake. What does she pick? Cupcakes with Princess rings on top. I let her get them and she was so excited to show him. He was equally excited, I think :)

Malakai had his lab draw yesterday, everything looks good except his GGT was alittle high. They're waiting until they get his Tacro level to make any sort of changes. I went to flush his Broviac (central line) this morning and it wouldn't. It kind of had me scared but thankfully after his home health nurse came out she was able to get it to go through. We would've ended up at Riley's ER tonight..not a fun place to be on a Friday night! Praise the Lord!!

Makena has become such a cute little kid! She's also become quite the little dancer. It's so sweet to watch her. She's been watching So You Think You Can Dance with me a little before bed and she tries to do what they're doing. The other night it was on, and she insisted on getting her ballerina dress on and stood in front of the TV trying to do what the girls were. Then she said "I have to go get Daddy!" because she needed a partner. So sweet!!!

I taught her a tough life lesson yesterday. We were driving home from Walmart with the windows down. I've told her multiple times not to throw anything out her window...well she threw her little toy purse out the window and screamed "MY PURSE!!!!" and immediately started to cry. My sister was driving behind me and said "Oh, no..she threw her purse out the window!" So I told Makena that was why we didn't throw anything out the window and now it was going to be gone forever. Her response? "It's ok, Mommy...we'll just buy a new one!" Priceless!

Wednesday, July 8, 2009

More pics...

He just keeps looking better and better! I would've never thought less than 2 months post-transplant he would look this amazing! What a miracle he is!

I really need to do a better job blogging! The summer is flying by and I am enjoying it being so nice out! Malakai is doing terrific. He's really growing and getting stronger by the day. He's sitting up well and just the other day starting taking small steps when he was holding onto my hands. I really had to help him out but he was getting the idea. And he's napping very well during the day, something we've been working on since his transplant. He's also sleeping alot better during the night. I'm only getting up 1-2 times, compared to 4-6 right after.
Josh's birthday is Friday, and we're planning a cookout/bonfire on Saturday night. That should be fun and nice to see some friends! Let's just say, this is a birthday he's not looking forward to and it ends in a 0 (wink, wink!)
I've been thinking about what I'm thankful for lately, and to be honest, I have more to be thankful now than I ever have in my life! I have two beautiful, healthy, children whom I love more than the world! I have a terrific husband, who's also my best friend...we've been through a lot together, more than alot of couples ever have to go through. He supports me and encourages me when things are tough. I have wonderful sisters... I honestly don't think I could ask for better :) I have a great mom who's had to endure alot in the last 6 years. She's stronger than she thinks she is and I admire her. My in-laws are terrific! They love my kids and my kids love them! They have a relationship I hope continues the way that it is going now :) I have great friends and family. I am truly thankful for everyone who loves me and my family! I'm thankful to live in a time and place where Malakai's life was able to be saved and organ donation is possible. I will forever be thankful to our donor angel and their family. I'm thankful we found Children's Hospital in St. Louis. We were blessed to have such an awesome team of doctors, nurses, and a terrific transplant coordinator.

Nothing really new to report, I guess that's a good thing! Things have calmed down and I'm enjoying trying to get back to "normal!"

Monday, June 29, 2009

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 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 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 :)

Monday, June 22, 2009

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!

Tuesday, June 16, 2009

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 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

Friday, June 12, 2009

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!

Thursday, June 11, 2009

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!