Thursday, October 28, 2010

Long overdue update!

Some recent pictures!!!

I don't even know the last time I updated, but I know it's been too long! We found out we are having another little boy! He still doesn't have a name, but we have 12 weeks left in the pregnancy to come up with one. Makena was very disappointed that he was a boy. She really wanted a sister. I told her I would be coming home with balloons and if they were pink, she was having a sister..if they were blue, it was another brother. She came running around the corner when she heard the door open and the look on her face was pure devastation. Poor thing, she really was upset. Shes gotten used to the idea now, and even acts excited. But still asks when she is going to have a sister...
Malakai is doing WONDERFUL!!! He is now completely out of all therapy. No more physical therapy, occupational or nutritional therapy. He's well on his way to being a normal little boy!! He's talking up a storm and developing his own personality. He's just recently learned to climb out of his crib, and thankfully has only done it once. But he's fighting naptime, and hasn't napped in over a week! He is starting to make himself throw up to get out of bed, something I never dealt with, with Makena. We have started to potty train and he's actually doing well. At first, he had no interest in it at all. But the last few days he's shown alot of interest and I am hoping he's trained, at least for the most part, by the time his brother gets here!

We had a big birthday party for him! Bouncy House, real cupcakes (with his dairy and egg allergy, he never gets treats like that!) plenty of Mickey Mouse and lots and lots of fun! He had a blast and we had a great turnout! He was saying "Thanks for comin'!" as people were leaving, so so cute!!
We go to St. Louis in a few weeks for his check up clinic visit. We havent been since May and really it's just for an ultrasound to check is portal and hepatic vein (where he had the narrowing) I'm excited for all of them to see him, he's really changed so much since then!
We recieved a letter from our donors family this week. It was such an emotional letter, awnsering a lot of the questions I have had since his transplant. They sent us pictures and she was such a beauiful, vibrant girl. I mourned for her family. They lost a very important member of their family. I've always known it, it just made it seem more real I guess. I hope to eventually build a relationship with them and maybe one day get to meet them. I'd love for them to be able to meet the little boy who's life they saved. They are forever in my heart and I love them.

Tuesday, August 3, 2010

Another hospital stay....

Malakai started developing fevers and becoming irritable a few weeks ago. I took him to the doctor who diagnosed him with an ear infection and started him on an antibiotic (Augmentin) After 8 doses, he seemed to be getting worse, not better. He basically stopped eating and would not let me put him down. He was in my arms, in the rocking chair, all day for four days. By Sunday, I thought he was looking pale and he was almost lethargic. After calling St. Louis and speaking to the doctor on call, he advised we take him to the ER to get him checked out. After three days at Riley, blood, stool and urine cultures all coming back negative, they were getting ready to send us home. Then he had a stool test positive for blood. After that, they set up an ultrasound and called St. Louis to figure out what they wanted to do. The ultrasound revealed that his portal vein (the vein going out of his liver) was narrowed. He had a narrow hepatic vein in January. The docs said for both of the veins to be narrowed post-transplant is rare. So we were flown to St. Louis on Wednesday evening and he was scheduled for his procedure Fridaymorning. They went in and ballooned his vein to open it back up. Because of his size, they didn't put a stent because he has alot of growing to do. Because of his multiple ear infections, and his body taking extra long to fight them, they went ahead and put tubes in his ears at the same time. I was thankful they were able to do both procedures at the same time with one anesthesia. He went back to eating and drinking normally after the procedure and was discharged Saturday morning. We were so glad to be home, and I think Makena was equally glad we were home! Poor girl, she's really starting to understand more when I'm gone. It was difficult this time being in the hospital, being pregnant and all. I slept in the bed with Malakai, and he wanted to be touching me at all times. Doesnt make for a very restful sleep. I'd do it all over again if I had to (praying we don't for a very, very long time) I'm just thankful he's here and is able to live a normal life :)

Thursday, June 24, 2010

Long overdue update

We have yet to get internet out at our new house and therefore I am never on an actual computer. I came into the office today to work so I decided while I had a few minutes, I would update this blog. I've been a terrible blogger post transplant. But I guess it's good that he's doing so well that I don't have much to update :) He's a walking, talking toddler. He's weaned from breastfeeding (Hooray!!) He loves to mimic his sister and he's finally been trying new foods and drinks! His labs were stable last month, praise God. He's sleeping through the night, although he's an early riser (Usually around 7:15) He's getting stronger in his physical therapy. You should see him try to jump. It's hysterical. It looks like he has a peg leg. His core muscles are what needs work but I think in a few months he will be caught up to his age. We've taken his Occupational thearpy down to only once a month...he's doing so well. He's also going to be a BIG BROTHER. Yes, I am indeed pregnant. Almost 10 weeks to be exact. This was not a planned pregnancy in the least. Malakai is still so needy and with his health being fragile, we were not expecting to have another baby at least until he was 3 or 4. But God has other plans :) We are due January 24th. Not only am I expecting, Josh's sister is pregnant with a little girl due in September and his brothers girlfriend is expecting a baby in December. Josh's cousins wife, we are close to just found out they are expecting as well. Four new babies in the Cruse family!! Makena really wants a baby sister and says if it's a boy, she will be sad. I'm trying to prepare her in case it is a boy. She understands but I think will still be disappointed if it's another brother. She will tell complete strangers "My mommy has a baby in her belly...but we don't know what it is. Only God knows. He gets to choose!" It's very sweet how interested she is in the pregnancy. She wants me to read her the pregnancy books and asks 1000 questions. Her mind is much different than when I was expecting Malakai. We're stuck with baby names, trying to decide if we stay with the "M" or move onto something new. We have plenty of time, I suppose :)

I am thinking of writing our donor family again. I sent the first letter in March and haven't heard back. I think about their angel often and what she has done for our family. She gave us our son back. I ran across this picture on my computer and it makes me want to cry. He was so thin and so, so sick. Here he was just weeks before his transplant. 7 months old and probably only 10 pounds.
And here is at Emma and Jack's birthday party riding a big kid bike. He really wants to be big :)
Messy after breakfast...complete with a baby food unibrow!

Here is my little guy at the zoos splash park. He loved being able to run around with all the other kiddos...I loved watching him. And check out that belly...doesn't he look great?!!!

Friday, May 14, 2010

Happy Liver Day!!

We celebrated one year with Malakai's new liver on Wednesday! The day was beautiful. I reflected alot on the past year and just how thankful I am for his donor angel and her family. Without a new liver, he wouldn't be here and I am forever grateful to them. My baby has endured alot of hardships over the last 18 months but I am so, so thankful for him to enjoy life and to be healthy.

We went to dinner with our immediate family...Rita, Brent, Clay, Addie (Happy 1st Birthday, girlie girl :) Sarah, Emma, Jack, Grammy, Billy, Nana, Papa and Uncle Jeremiah. I brought along butterfly cupcakes...the butterfly is the symbol for organ donation.

We went on vacation last week to Orange Beach, Alabama. I will be posting pictures as soon as I can find my camera cord. We had a blast! They both did well on the flights and behaved very well. Both kids enjoyed the beach and the pool. We had a little scare while we were down there. I had to take Malakai to the ER in Pensacola to have his blood drawn. He had a bloody stool, and with his internal bleeding in March we had to be extra cautious. Everything checked out OK and we enjoyed the rest of our time. But man, it was scary!

Friday, April 23, 2010

It's been a month since my last update!!

My handsome little man fishing with DaddyEaster egg hunt
Makena and Malakai with the Easter Bunny

This is what he does when you ask him to do his "Home Alone" face :)

Kids at the Butterfly Gardens

After being released from the hospital, Malakai has done very well. He was diagnosed with RSV the day before we were discharged so we had to postpone his venogram he was supposed to have on that Friday. We were told to get labs the following Monday and then again two weeks later. His labs have not only stablizied, they've improved! The venogram is not even necessary at this point! Praise God!! His hemoglobin was 10 at his last draw. The lowest it got was 5.2 and it should be 12. So we ARE getting there! His belly is flatter than it's been in months and he's even walking!! I am beyond proud of him. He started standing on his own, getting up by himself and as of the beginning of this week, he started actually walking. 10 - 12 steps at a time!
We are finally getting settled into our new home. Makena loves having the space to run, although her being so far away from us at night has proved to be a little scary for her. She ends up in our bed about 50% of the time...which usually means she sleeps later. Malakai likes the new place because of the cows. We can hear him through the baby monitor in the morning saying "cow, cow" He thinks he can see them through his window. We do have about 50 cows that live surronding our new place. We walk almost daily to go out to see them.
His vocabulary is constanty growing. He says Nana and Papa, Mama and Dada. Jack, Emma, he calls Makena"dit" or trying to say Sis. He says ball, cow, drink, bye, hi, baby, yellow, blue...I'm sure there are more that I'm forgetting. It's so amazing watching him grow into a toddler. He looks up to Makena and wants to do the things she doing.

We are doing the Liver Life Walk on May 22. It's downton Indianapolis, if anyone is interested in walking with us, please email me and let me know. I'm thinking about ordering some t-shirts for everyone walking with us.

Wednesday, March 24, 2010

Update via Aunt Sarah

Carah has asked me to update her blog nearly 100 times over the last week and I continued to forget. She just called me and said she would beat me up if I didn't get on and update. I am going to copy and paste her status updates from Facebook - so I hope you get enough details from them :)

Thursday, March 18 @ 11:47am
Back in the ER. Malakai had blood in his stool this morning. They're gonna get his vital signs, hoping and praying this is minor and he will not be admitted.

@ 2:59pm
His hemoglobin level is very low at 5. Blood transfusion soon and scope. Possible transfer to St Louis. Pray for him.

@ 5:58pm
Well, we are being admitted ;( At least one, if not two days. He's unable to eat or drink and is very unhappy. They will watch his levels and will then decide which route to take. They need to find the source of bleeding. Docs here at Riley and St Louis decided it was ok for him to stay here...

@ 10:09 pm
Has your heart ever hurt so badly for your child you feel like you just need to cry? My poor baby is miserable because he can't drink. He's asked for one a thousand times. I just wanna run out the door with him. Please pray they find some awnsers, soon. I hate hospitals !

March 19 @ 9:43am
Malakais hemoglobin continues to drop, even after his blood transfusion which suggests he is still bleeding. He is going into the OR in 20 minutes for an exploratory scope. Hopefully they locate the bleed and are able to stop it. He's resting peacefully at the moment, although last night was very rough. I actually slept in his crib for part of the night.

@ 11:42am
He is out of the scope. Unfortunately, they didn't see anything abnormal. He is going to get a PICC line inserted and the team here is calling St Louis to come up with a game plan. Probably staying here awhile unless something big happens. Waiting to go see my little mommas boy :)

@ 2:26pm
He's currently undergoing a test that tagged his red blood cells to see if they can find the bleed. This will only work if he is actively bleeding. He's sleeping, which he needs. They don't think this will show much but it was an easy test to rule out.

@ 10:50pm
Seriously, it's 10:48 pm and Malakai is cruising around his crib, watching tv, laughing and playing peek-a-boo. Are you sure this kid had three procedures today and bleeding internally? He sure is a trooper :)

March 20 @ 9:53pm
Malakai continues to be up and down with his hemoglobin and hematocrit levels. He had normal stools all day until tonight when there was blood again. My instincts tell me he will be air transfered to St Louis on Monday for further testing. I will go home tomorrow while Josh is here with him and shower and pack a bag. I... just want him better. I feel like we have yet to really see the REAL Malakai. A healthy Malakai. Please continue to pray...

March 21 @ 8:56pm
thankful for a break from the hospital. Daddy and Papa came up today and I was able to eat lunch with Makena, take a nap, shower, eat dinner and I'm now back with Malakai. Hoping tomorrow we have a game plan...

March 22 @ 4:13am
It's 4 am and Malakai is wide awake watching Mickey Mouse Clubhouse. I'm sure his routine will be hard to adjust when we go home. Oh, the joys of hospital stays...NOT!

March 23 @ 10:11am
His hemoglobin rose from 8.9 to 9.5. Liver numbers are a little high but it's because his Tacro (anti rejection medication) level has been low (common with illness) everything else looks good. They are cutting his iv meds again today. Chest X Ray because he sounds a little raspy but it's more procautionary. Looking at ...Thursday as a discharge day. Hoping his bloody stool doesn't come back with the decrease of his meds.

March 24 @ 11:40am
Ok. They're doing another procedure at 1:00, although he won't have to be sedated. This will look to see if he has an abnormality causing the bleeding. Long story, I'll fill you in later if it shows something. Still going to STL Friday so hoping to be discharged early tomorrow. Pulmonology is coming to listen to him a...nd they've sent off cultures from his nose. He's coughing and sounds crackley when he breathes. He's in isolation and may be transfered to a different floor because of the other transplant patients. Another day in the life of a transplant mom!

Wednesday, March 17, 2010

Latest and Greatest

Well, alot of time has passed since my last post. We were unsure if things were going to go our way, but they did and now we have moved into a beautiful new home! Last week was spent packing boxes and going through our old house. We hired movers and they arrived Friday morning at 10 am. The job was estimated to last eight hours and the poor guys were at our house until almost 1 am. Yup, 15 hours. I felt so bad for them. We fed them lunch and dinner, I'm not sure what they would've done if we hadn't fed them. I think they were planning to eat when they left. We have alot of very heavy furniture, that alone is why we hired movers. We had alot of help *Thanks everyone!!!* over the weekend and are getting close to being settled. I have been fighting a serious sinus infection so I haven't been as productive as I would've liked! This new house is seriously like a dream to me. There were so many things about our old house that I had learned to live with, but didn't like. We had well water. I didn't like doing laundry or showering with well water because it was so hard. And my washer/dryer were down in the basement, which was basically storage. I had to make sure both kids were occupied to do laundry. The closets were tiny. We didn't have a garage. I could go on and on. The new house, I have my own bathroom and walk in closet. I've literally taken a bath every night since we've been there. The first day there, the washer didn't stop. It was so nice to be able to do laundry while the kids played in the living room. I was only a few steps away. There is plenty of room, everything has a place. We have a very large garage and circle driveway. Makena enjoyed riding her bike yesterday (Looooove this warmer weather!) and I'm actually looking forward to cleaning my truck out tonight! I feel very blessed. Truly blessed. Exactly one year ago today, Malakai was being flown to St. Louis for the first time for his transplant evalutation. Amazing what one year and a healthy liver can do for a family :) Thankful everyday to our donor family!

Ok, what else? The week before, I took Malakai out to St Louis for allergy testing. He had been throwing up and had very loose stools for months. We thought maybe he was allergic to something he was eating so we got an appointment set up quicker than normal and headed out there. He was tested for common allergies and some things he eats alot, that may have been causing his symptoms. He tested negative for onion, tomato, garlic, peanuts...those are the things I was worried about. He did test sensative to dairy and eggs. The transplant team started him on a steroid, Prednisone, to see if that helps. So far, so good. I've tried to cut most of the dairy/egg out of his diet, although most of what he eats doesn't have any of that in it. He's a very picky eater and we're actually going to see a feeding therapist to see what they think. Hopefully they can give us some ideas on what to feed him and how to go about new ways to get him to try new foods. While we were out in St. Louis we stopped by the hospital and met a little guy named Jax. He is currently waiting on the perfect liver. Chatting with his momma put me right back about a year ago when I was the one waiting. The wait is torture. Wondering WHEN you were gonna recieve that call. Your mind plays these terrible games and you feel like you're going crazy. I hope and pray he gets it soon...

Recently, his belly has started getting bigger again and his veins are protruding alittle more than they were. The concern here is that his hepatic vein is narrowing again (stenosis is the term, not sure how to spell it) We are scheduled to go out to STL on March 26th for another venogram to expand that vein again. He had it done on January 22, and it really shouldnt need it again. But, his was more narrow than usual so I guess maybe he's just the not-so-usual case! We are also encouraged to try to get more protein into him. They've thrown out the idea of starting a feeding tube to ensure he's getting the right nutrients, so I'm gonna try what I can to get him to eat more balanced meals. I REALLY don't want a feeding tube back. I hated that thing. He hated that thing. Life is much easier without it. And he's much cuter without it :)

Makena is growing up way too fast. I know I hardly talk about her on here. She's a good little helper, loves to feel grown up. She actually helps do the dishes and likes to wipe the counters down. When she doesn't know what you're trying to say, she'll say "What'd you said?" It's cute! She LOVES dance class! She told her Nana she learned how to "shovel" trying to say shuffle. Nana said, "Next, you'll learn how to flap." And Makena said, "I already know how to flap!" and started flapping her arms like a bird. With your feet, dear. Not your arms :) I love that little girl to pieces.

Once we get internet back at home, I will try to post some new pictures. I know it's been forever! Thanks to everyone who thinks about Malakai and prays for his health. Keep it up, we will always need it :)

Tuesday, March 2, 2010

Sending my letter out today

I'm sending the letter to the donor family today. I'm nervous and excited. I hope to hear back from them, but I also realize there is a good possibility that I won't. I truly hope they know how much I deeply care for their family and how appreciative I am that they gave Malakai his life back. He is doing well from a liver stand point. His new liver is very happy and healthy. His numbers are stable and continue to be so. I will post the letter I wrote, but I haven't decided when. I want them to read it before I post it on here. I continue to pray for peace and comfort for them. I hope they're doing well.

Wednesday, February 24, 2010

"I did it"

"I did it" is Malakai's first phrase. He usually only says one word. His vocabulary is definitely expanding and just a few days ago he started saying "I did it" when he did something he was proud of. Throwing a ball into a basket, standing on his own for a few seconds, etc. It is very sweet :) He started physical therapy last week and during his session, he would say "I did it" before he did anything. His therapist would say "No, you didn't do it yet" and he'd say "I did it" It was cute! He's now saying "My Mama" and pointing to me. His favorite word is still ball :)

Malakai ran a fever a few days ago. It got up to 102.4, I gave him Tylenol and it broke pretty quickly. He's had a alittle bit of a cough but seems fine. Makena is sick today. She woke up around 3 am coughing, kind of barky coughing. She came into the bed with us and I could tell she had a fever. When she got up this morning I gave her some Tylenol Cough and Cold and she seemed to be better. She's played and acted normal until about an hour ago. Her temp is elevated again and she's laying on the couch watching tv. Hopefully it passes quickly. I hate when they're sick.

Some big things could be in store for our family in the near future...we're not pregnant, LOL, but stay tuned for possible big news :)

Sunday, February 14, 2010

Ashley's Gift: A Liver for LuLu

I've been following a little princess, LuLu, and her journey to transplant. Their local newspaper did an article featuring both her and her donor angel, Ashley. It's a very touching story, and very emotional to read. It made it seem more real that Malakai actually recieved a portion of someones liver, and that little girl had a family. I have a letter written and I will be sending it soon. Anyways, take a look at it. The story seems like something out of a movie.

Saturday, February 13, 2010

Some new pics...

Malakai's 1st time in the snow He was OVER it! Get me outta these clothes!Makena actually sat still long enough for me to curl her didn't stay this pretty for more than a few hours
Lookin' sharp after his very 1st haircut

Thursday, February 11, 2010

Obstruction or No Obstructon...

That is the question...

Malakai wasn't allowed to drink anything past 10:45 am this morning and we were to be at the hospital at 12:45, procedure was supposed to be at 1:45. We got into our room around 1:00 and were seen by the nurse, anestisologist and then the GI doc came in. We'd never met her (or if we had, I don't remember) and she was the one supposed to do his scopes. Josh asked her if she knew why she was performing the procedure and we could tell immediately that she wasn't sure. Bottom line, she wasn't aware that he was on aspirin, and being on aspirin makes you at higher risk for bleeding. So we waited until she spoke with his doctor and another GI doc. We were given the decision, go ahead with the scope and know that he is at a higher risk to bleed, or wait until tomorrow...which would mean admitting him overnight and doing the scopes tomorrow. I didn't want to wait. He'd already been without food and being in the hospital RUINS him! So we decided, along with the doc, to go ahead.

He had fallen asleep on me at this time, it was 2:45. So I took him straight into the procedure room and was able to be with him until he was asleep. He was given gas through a breathing mask so he would be out before they put in his IV. We were told it would be about 1 1/2 hours and were given a pager. We went to the cafeteria for lunch and within an hour we were being paged over the overhead speakers. We went to the APC where his procedure was done and told them we were being paged. He had already come out and we were met by a doctor whom we'd never met. He told us that Dr. Weymann wanted to speak with us to "let us know what the next step was" My heart sank. I thought for sure something was wrong, 1.) because he was only back less than an hour. I thought maybe they found something definitive and stopped because of that 2.) they were paging our doc to come talk to us.

The doc came in and said his upper scope went well. The tissue in his esophagus looked good and that his stomach was a little red which can be nothing, but can also mean inflamation. The lower scope was a little more difficult. She said she was able to go in 70 cm and then the scope wouldn't go any further. I thought this meant blockage. So he was sent to Radiology and given an enema barium test. Basically they inserted a tube into his bottom and shot barium fluid into his rectum to watch how the fluid passed through his body. Thank God, this went well. It was TERRIBLE to watch him lay there helpless. He'd just come out of anestetic and now he was being forced to lay in different positions with a tube up his heiny. Poor little guy.

After speaking with the doc, we decided to stay in St Louis one more night. It was already 5:30 pm and we figured it was in his best interest to stick around. They want us to call in the morning to check on him before we leave for home.

He's sleeping and doing well. He wasn't as excited to eat as I expected. He ate a little bit of mashed potatoes and chicken, and a little banana babyfood. He's basically wanted to drink his apple juice. I'm trying to wean him from breastfeeding and right now he's doing well. I hope tomorrow is as successful as today :)

I can't wait to get home and give Makena a big squeeze. I miss her so much while I'm gone. We Skyped the other night and it was really good to see her. She loves her Nana and Papa, but I know she misses us too. She doesn't quite understand why we are all in St. Louis at the hospital and she's not here. She thinks the hospital and St. Louis are fun, thankfully it's a happy place for her :) but sad that she wants to be here and can't. I know it will change as she gets older, I just hope we're not here very often!

Thanks again for praying for us!!!

Wednesday, February 10, 2010

No bowel obstruction...

Well, I updated last on my iPhone and for whatever reason, I couldn't write anything other than in the Title. So that is why it only had a brief note.

I took Malakai to our pediatrician office on Monday morning and he was concerned because Malakai's belly was enlarged (I took him in because of this and he has been throwing up on and off for about a month now) We were sent over to the hospital for an X-ray. The radiologist called the pedi and said he thought there was an obstruction. We were told to head to Riley because Malakai needed to see a surgeon that day. I called to his transplant team in St. Louis and they were (as always) on the ball and we were able to avoid going to Riley.

We came in on Monday night and stayed in a hotel. He had an obstructive series and bloodwork done first thing. During the ob. series, he had to drink a terrible barium solution and they watched it going through. He had x-rays done every 30 minutes to show where it was going. This came back positive, as in NO OBSTRUCTION! Thank God. The radiologist back at home was not used to seeing a pediatric liver transplant patient. That being said, Malakai's anatomy is different than other children. All of his intestine are kind of squished in and that is why the radiologist thought there was a blockage.

The bloodwork, however, turned out his hemoglobin level was very, very low. We've known he is anemic for awhile now and he's on an iron supplement. It just hasn't been enough so he was given a blood transfusion while we were there. It was crazy how pale he was, and I didn't really notice HOW pale he was until about an hour into the blood transfusion, his cheeks started turning pink. I mean, he looked like he had been outside on a summer day playing in the heat! They were that pink! He has felt so much better since getting that boost. The nurse said he was getting "a pep in his step and pink in his cheeks" and boy was she right!

We are currently still in St. Louis. He will be getting an upper and lower scope done tomorrow to check for the source of his vomitting and hopefully getting some awnsers. Because of the tests, he hasn't been able to eat anything solid today...only apple juice, Sprite, chicken broth and jello. He's done GREAT! I couldn't have asked any more from him! He hasn't napped, it's 8:45pm and he's still going. That extra blood really helped him out yesterday!! So if you're looking for a reason to donate blood, let that be it!

Let's hope tonight goes well. He's used to nursing himself to sleep and if he wakes up, he usually nurses back to sleep. So tonight should be interesting so say the least! I'm thinking we may be weaning him all together, it seems to be interfering with his appetite and this may be a good time, seeing as though he's going to have to go a full 2 days without it. Wish me luck, I'm gonna need it!

We won't know any more from the scopes for about a week. They're going to take samples from his colon, esophagous (totally didn't spell that right) and other organs. They'll test him for infections, look for ulcers, etc. I hope they can find a reason to his vomitting and he'll be able to move on from here. I am sick of him being sick. He deserves to feel good!

Once I get home, I'm going to try to put some new pictures. I realize it's been awhile and I have taken about 500 pictures since the last time I put any on here. Just know that he looks amazing and is getting SO big!

Thanks for praying for us and thinking of Malakai. He's a true miracle and I am blessed beyond measure!

Thursday, January 28, 2010

Yet another hospital stay...

I wish I updated my blog more often. Our internet at home is so slow and it takes forever to get enough time to get on and write.

Since my last update, I got in a car accident (no injuries, thank the Lord) and I turned 25! That feels old! Josh and I went out to a nice dinner and movie, alone with no kids (Thanks Nana and Papa). We really should do that more often. It was nice to have adult conversation and not having to feed someone else before I ate! With the accident, I was hit from behind which pushed me into the truck in front of me. My truck is in the process of trying to figure out if we want to have it fixed or just to get a different one.

More importantly, Malakai's belly started increasing in size and his bloodwork showed he was anemic and his albumin levels were low. His transplant team requested we come to St Louis one week earlier for clinic, as we were supposed to go out there the last week of January. We were told to expect to stay a few days and that's exactly what we did. He had a narrowing in his hepatic vein which restricted the bloodflow. He developed ascites because of this. We were admited on Wednesday. Two more nights in the hospital to add to our list of admissions. He had a procedure on Friday where they went in through his jugular vein and basically ballooned out his vein. I feared he would be a mess if I had to hand him off to a nurse so I asked if they could give him something to relax him. It helped alot, but then they let me take him straight to the OR table. I was able to stroke his hair and hold his little hand until he was completely out. He cried a little bit because it made him feel so funny, but only about 5 seconds of crying and he was out. It was definatly scary watching him just leave the room, in a sense. I was glad I was able to be there with him, he wasn't scared because I was there. It took him a little while to wake up but once he was awake, he wanted to nurse right away. He took a pretty good nap and we were able to go home that night. I'm hoping this is our last hospital stay on 2010! I know it's only January, but I have to be positive, right?!?!

Malakai is doing amazingly well! He's crawling all over the place and starting to walk with our help. He climbed the stairs at our house all by himself (with daddy close behind) which was quite the task. We have alot of stairs! He loves bubbles and still LOVES to play with any kind of ball. He calls them "ball-ball" trying to say basketball. He is also a little love-bug. He wants to give kisses to anyone wanting one :) He'll pucker out his little lips and expect you to walk across the room to give him a kiss. Then he'll keep kissing you until he's tired :) It's absolutely heartwarming. His favorite 4 words, which he uses correctly, are Ball, DaDa, PaPa and Momma (newly using it as of yesterday....before he would only say Momma when he was crying in his crib) He can use the sign language signs for Nurse (milk), Please, more and recently all done. It's so sweet to see him expressing himself.

Malakai has a new liver buddy, London. She recieved her "Gift of Life" just a few weeks ago and is doing amazing! Check out her blog Her momma does an awesome job on updating her site :)

Wednesday, January 6, 2010

Busy month, lots to update

The last four weeks have flown by! So much has happened since my last post. I'm sure I won't remember everything, but here I go...

We had Makena's third birthday party at the house. I stayed up late the night before putting up decorations so when she woke up in the morning the house looked ready for a party! She was so excited. She said "Mommy, this is the best birthday EVER!" No cake or presents needed, just a few balloons and streamers and I had already made her day. She got lots of cool presents and had a great day! She was dressed in her princess dress, complete with matching tiara. Her cake was a big castle and before she blew out her candles she closed her eyes really tight and said "I wish for a castle" then blew out the candle. All in all it was a great day and we were surronded by wonderful family and friends!

Then Christmas was right around the corner. We were so busy the few days before. Makena had her Christmas program at preschool. She was the kid running infront of the line, yelling to us in the audience, twirling and dancing when she wasnt supposed to. But it made us all very proud! It was so cute!! Rita, Sarah and the kids came over to make cookies. They had a blast and it's a tradition I really hope we keep. Christmas Eve we went to my aunts house and then to Josh's parents house. Christmas morning we woke up and opened presents. Makena got her Loving Family dollhouse. We waited until the last present to give it to her. She was waiting so patiently (which is very hard for her) and then she tore it open and the expression on her face was priceless!

Josh and I left for a Caribbean cruise on the 28th and were gone 6 days. It was so nice to get out of the Indiana cold and into very warm weather. We basically soaked in the sun during the day, and at night we went to the nice dinners and shows they had. Josh was a frequent in the casino :) He would've lived there if I would've let him! It was nice to have some adult time and it was wonderful to have some alone time with Josh. The kids stayed with Perry and Cindy (Josh's parents) and Makena spent one night with each of my sisters. They were both thrilled to see us. Malakai wouldn't let me out of his sight for the first two days were home. It was hard leaving right after Christmas because I came home and had alot of work to do (still have alot to do) like take down the tree...

Malakai is doing well. We're looking into starting physical therapy with him. First Steps is a service he's currently working with, but they only have an occupational therapist available. I might be contacting Riley to see if they can get him in. I'm not super concerned with him, but I know he should be doing more than he is. He's 15 months old and I feel like he's no where near walking. He's pulling up on things, but not moving at all once he's up. Other than that, he's thriving and growing everyday. He's getting to be a little stinker, just like his sister :)

I wrote a letter to his donors family last night. I haven't printed it yet, and I need to get some pictures printed of him to send with it. I feel like I need to let the letter sit for a few days and then make some changes if necessary. I hope they know how much I love them and appriciate their decision to donate their childs liver to Malakai. I hope they write back, but understand if they don't. We shall see...

Well, hopefully the next time I write it won't be a month in between...I have a little boy who is begging me to lay him down for a nap :)