Sunday 12/12/2004

    Wow it has been a long time since I updated our site! The short of it is that Cole is doing extremely well. By God's grace his liver numbers continue to be perfect. By God's grace, Cole hasn't gotten sick this year. By God's grace, Cole has virtually caught up with his speech and physical skills. By God's grace Cole is one of the happiest kids I know. But for those of you who want details...here are some highlights of the last 4 months.I'll start with what kind of things Cole is doing. He is nearly caught up in both speech and physical skills. He is saying 4 to 6 word sentences and can repeat just about anything. He still has a hard time with certain sounds, like the “s” sound, so Santa sounds like Danta. Cole is definitely harder to understand than Anna was, but he seems to know what he is saying and gets pretty frustrated when you don’t understand him. Kinda like, "You dummies, I said this 5 times, aren't you listening!!"
    He is running all over the place. We took the kids to see the Incredibles yesterday, and Cole was pretending to be Dash, the little boy who literally can run so fast he can run across the water. Cole and Anna were running all over the house, and only collided with each other once. Cole is really trying to walk up and down the stairs. When I take Anna to her pre-school, Cole insists on trying to climb the stairs himself. The stairs are a bit shorter and have a great open railing he can lean on. The problem is Cole lacks the speed and efficiency needed when there is a full stair press of kids and adults behind him.
    Anna and Cole play so well together. Anna has become quite the little mother. After I pick up Anna from school, I tell both kids they need to go upstairs and play in the playroom. I am not kidding when I tell you for an hour and a half they play together. This gives me some much needed rest. The only draw back is the aftermath of two preschoolers playing by themselves. One might think a localized tornado swept through the room. But for the most part they are good about getting it cleaned up.
    Let’s see…. Cole has gotten to be such a big boy about getting his labs done. He only goes in to the lab at the hospital once a month for blood work. He has gotten to where he will literally hold out his arm as the tech puts the tourniquet on and he never cries or even makes a sound as often they have to fish around for the vein. This past month the tech asked Cole if he was ready before she stuck him and Cole shook his head “Yes.” Then while she was drawing the blood he was smiling at her. Is that not amazing? Remember he is only 2 ½!! Guess he figures why fight it or maybe his pain tolerance is so much higher than the average kid. Probably both.
    In fact last month Cole got his first stitches…well his first big boy accident type stitches. He was running around the house and fell and hit his forehead on the kitchen island. Del was thankfully working out of the house that day and heard the crack and ran in to see Cole covered in blood. The head has a lot of veins and so blood was gushing down his face. It looked like he was hit by a baseball bat, real scary looking. I ran in and Del said we needed to go to the urgent care clinic because it looked like a deep gash. She said she could see fatty tissue. I can’t handle the sight, so it is a good thing I didn’t look. Cole was crying a little, as I got shoes on and Anna ready. By the time Cole got in the car he had stopped crying. On the drive to the clinic, Cole would occasionally just say, “Ouch.” That is all, just “Ouch.” Well at this point we figured it would be cheaper if we could get into the pediatricians office rather than the huge co-pay at the urgent care clinic. So with a phone call we headed to the peds office. As our friend and pediatrician put in the stitches Cole never made a sound. Four stitches later Cole was up running around again. That is one tough kid.
    When I say that Cole is running around picture this… First of all Cole weighed a whopping 36 pounds 2 months ago. At the time Anna and Cole weighed the same, but Anna is taller by about 5 inches or so. Today I bet Cole weighs more than Anna. So when he runs it is like a little tank coming at you. Cole doesn’t look fat or obese. He does have a big belly though. He hasn’t quite grown into his liver yet, so he looks like a barrel-chested little boy.
    The fall months were very uneventful with the exception of a fabulous trip to Walt Disney World. My parents and my Aunt went with us to Disney for 6 days. The kids had so much fun as did the adults. It was our first family vacation with both kids. Last year we didn’t go on any vacation and hardly out of the house for that matter, because Cole was too sick. And then in the summer Del and the kids went to the beach while I was in Africa. So this was the first time the entire Jackson four was on vacation together. I can’t even begin to tell you how much everyone enjoyed the time together. The kids behaved sooo good. The vacation was only supposed to be 5 days, but Hurricane Jeanne decided to come back to Florida. She slammed Orlando the 2^nd day of our vacation. An itty bitty hurricane wasn’t going to dampen our fun though. We hunkered down in the room for 36 hours and waited out the storm. The park sustained little damage, mostly to trees and roofs, but they opened up on time the very next day. This led to some very empty parks. There were no lines anywhere. Anna round Pirates of the Caribbean and Buzz Lightyear 4 times, Test Track 2 times, the carousel 3 times. For the most part all the rides were “walk on’s”.  Cole was a little scared of the dark rides, but he toughened it out by clinging to one of us and covering his eyes. I hope we didn’t traumatize him too much. One thing we weren’t prepared for was how much the kids would love the characters. Anna wanted to get her picture with every character we came across. We also had to get them all to sign her autograph book. There was a problem with one of the characters though. King Louie, from the Jungle Book, couldn’t sign it because his hands didn’t work, so Anna made me sign it for him. Cole loved the characters as well. In fact he fell in love with 2 of them, Perla, an obscure mouse from Cinderella and the Fairy Godmother. He was infatuated with them. It was a good thing there was no lines for the characters cause that would have taken a huge chunk out of the park touring times. Another cool story about the characters was during the MGM parade. Cole was wearing a Buzz Lightyear shirt that day and Jessie the Cowgirl from Toy Story noticed. She motioned to Buzz who was riding atop a car and Buzz waved and saluted Cole’s loyalty to the Galactic Federation. Then we just had to go and visit Buzz and Woody at their meet and greet area. Surprisingly the only character Cole was hesitant of was Stitch, and that was very surprising considering he loves the movie. In fact he and Anna often pretend to be stitch and even talk like him. Go figure!!
    There were a few pretty funny ShAnnagins that I will try to post also. And as I am sure most of you want to see pictures I’ll also try to get a few on the site as well. But let me tell you, my Aunt brought her new Canon Digital Rebel, and after we removed the unwanted pictures we were still left with over 300, so don’t expect to see them all. This was an incredible vacation to remember for a lifetime. Anna was in her dream world! Cole would have had more fun if he were a few years older though.
    Other things going on in the Jackson four is probably the same things going on in your lives. We are getting ready for Christmas. This is going to be a fantastic year. Remember last year we barely made it home from the hospital in time for Christmas. And remember also, everyone that came into the House had to wear a mask. We all opened presents wearing surgical masks. And Cole wasn’t feeling all that great as it was. Well this year, by God’s grace and mercy, Cole will be one of the most excited little boys you can imagine. As will his entire family. We are looking forward to a very happy and normal Christmas. God just continues to shower us in His grace.
    Oh one other thing the kids seem to love is the Christmas lights on our house. I am kind of a Clark W. Griswold of lights and once again this year I added even more to the blinding spectacle. We now have a “kickin’ Santa” on the roof. It is an animated Santa legs that kick and look like the jolly fellow is stuck in the chimney. I made this thing about 7 years ago, but have never had the guts to lift it and secure it on our very high and very steep roof. But by golly I got it up there this year. The problem is going to be getting it down!! I’ll try to take a picture or short video clip. It is funny!!
    But the main thing to remember is just what Christmas means. Yeah there are some indirect meanings, like giving, loving and showing kindness to our friends and family, but it is so much more. It is the day that God gave us the perfect gift in Jesus Christ, Our Savior and Lord. God reached down from Heaven and gave us a way to cleanse us of our sinful nature and deeds. He loved us so much that while we turned from Him, He gave us His only begotten Son, the God incarnate Emmanuel, to live a perfect and righteous life free of sin, something that you or I could never do. Jesus would then willingly face a painful and humiliating death on the cross to atone for our sins. The shedding of Jesus’ perfect blood paid for the sins of those who believe. God forsook Jesus on the cross and poured out the wrath that you and I deserved onto Christ. Jesus did that for me and for you. How is that for the perfect Christmas gift?

Have a wonderful, safe and very Merry Christmas.

Saturday 8/28/2004

    Well after several e-mail requests, I got my lazy butt in gear. I guess I'll start with the exact day one year later. August 14, 2004. I had this grand vision of having a huge barn burner celebration. Del didn't seem to keen on it at first at least to me. I don't know, I guess I had build this huge event up in my mind. I was really hoping for it to not only be a big celebration but a time to reflect and praise God. I wanted to show everyone just how God has blessed us. I wanted to shower Him with praise and glory, in front of everyone there. Even weeks before I had been going back and rereading the journal entries prior to the transplant. I would get a huge lump in my throat and be on the verge of tears at just how God had wrapped His awesome comforting arms around us. I wanted a day that we could all joyously celebrate that. But it didn't happen that way. Del didn't seem as "in to it" as me. I don't know maybe I just placed it on a higher platform or maybe we both just had different ways of seeing the day. Needless to say Del and I butted heads over how to celebrate. She was all for the party, but seemed to push all the responsibility onto me to plan it. I am not the best planner though. We eventually kissed and made up, and she ended up helping me put a list together and contacting over 100 people to come Saturday at 3. However, hurricane Charley had other ideas. The weekend was rainy and miserable. We ended up canceling the party. I felt bad, but the more I thought about it the less I felt bad for myself and more for Cole. Remember Cole's 2nd birthday party? No little kids Cole's age showed up. I was hoping this party would make up for it. I was hoping for a ton of kids. All running around the back yard, having a blast, and Cole running right there with them. But God apparently had other plans. We said maybe we would just postpone it, but the following weekend we were away in Cinnci for Cole's check-up, and this weekend the whole party idea has kinda lost it's zing. Anyway, I just spent the day doing regular things around the house. I did stop and thank God quite often though.
    Cole has also had a virus or something a week before the planned party. I  took him to the pediatricians when he had some red and goopy eyes. His eyes just looked swollen and for several days there was goo coming out of the corners. On a few mornings his eyes were glued shut. The doctor said it looked like drainage and not pink eye or anything bad. But the doc did see Cole had another ear infection. More antibiotics for Cole which led to the whole diarrhea thing. A few days later I got the same eye goo virus. I woke up several mornings and had to pry my eyes open. It felt like I was under water with the pressure. And it took about a week for it to clear up for both of us. Then Del got sick. Probably started with the same bug, but hers turned into a stomach thing. Unfortunately hers lasted around 10 days or so. So Cole and I were just getting over being sick on the actual anniversary and Del was at the end of her illness. But as of today we are all well.
    Even despite feeling a little sick, Cole is such an awesome little guy to have around. He is always so dag gone happy! Anna and Cole get along so good and they really do play together. I know at this age it is more parallel type play, but Cole seems to like interacting with his role model sister. Some days I just like to watch them play and I feel so compelled to thank God for such awesome kids.
    Cole is also smart as a whip. The other day we had a therapy session with the child specialist. Cole was sorting and stacking beads by color. He was saying the color and then placing each bead on a different peg. The therapist said she sees 3 year olds who can't even do that.
    And the last main update is Cole's 1 year appointment in Cinnci. For this you will all have to wait another day. You see the Carolina Panthers are playing a pre-season game against the New England Patriots, a super bowl rematch. So Gotta go for now, but hopefully I will get back to the update tomorrow.

Sunday, 8-29-2004

    Way to go Panthers!! I know it was only a preseason game, but man they look good. Lets hope they can keep it up all season.
    Alright back to the update on Cole. The last thing I was going to tell you all about is his big 1 year post transplant appoinment. The results were great! We first flew up to Cinci on Thursday the 19th. We flew commercial, because we were going to be staying overnight, and we couldn't aske Children's flight of hope to take us up one day and then come back and get us the next. But those airlines really sock it to the business traveler. I think the plane tickets were around 800 each!! But that is what the fund raising was for. Anyway, we got a suite at the Vernon Manor, a nice historic hotel a few blocks from the hospital. This is the place where most of our friends and family stayed during the transplant. The hotel is very neat. It is actually were some scenes from "Rain Man" were filmed. They offer unbelievably low rates for families with kids at the hospital. We got a huge suite with a separate room for Cole for about $80. Unfortunately, we found out around 2am that the AC didn't work in the room where Cole was sleeping. He woke up sweating and crying. What could we do? We couldn't call downstairs and have someone fix it at 2 am! So we put Cole's crib in the main living area, but he was so unsettled that he didn't go to sleep and just cried and cried. Mommy got the bright idea to stick him in bed with us. This is something I have always been opposed to. Nobody gets good sleep that way and it only encourage him to think that he could keep doing that. And let me tell you that boy is not going to be making a habit of sleeping with us. No WAY!!   Anyway, it didn't work at all. He was wide awake at this point.  He was crawling all over and talking. Del was trying to nicely get him to quite down. But he wasn't listening at all. Finally I pulled my head out from under the pillow, firmly grasped Cole and yelled, "Lay down, be quite, and GO TO SLEEP!!". Well it worked, that kid didn't say another word all night. I think I put a little fear of daddy in him. Hopefully it was a healthy kind of fear. Del was amazed.
    We had to be at the hospital at 7:30 for his 7:45 ultrasound, and Cole couldn't eat before. So needless to say it was a tough sleep deprived morning. Cole, though, did great. He just lay on his back on the table for about a half an hour while the tech scanned his belly. The scan showed everything is working fine. The next test was his GFR. They took us over to another room where they injected a radioactive contrast into Cole's hand. We then had to wait 2 hours  to let the contrast circulate. But they said we could let him eat at this point, so we went to the cafeteria for a hardy breakfast of eggs, bacon, ham and the works. Our next stop was the lab for blood. The nurse got him first try. They needed to take a bunch of blood for a huge amount of test they would run. But Cole did great and only cried a little bit. At this point we went back to the waiting room to wait out the next 20 minutes or so. Then the nuclear medicine tech came out to bring Cole back and get more blood for the GFR study. I am not really sure what GFR stands for, but it is a test that shows kidney function. The dye is injected and allowed to circulate for 2 hours, then blood is drawn every 30 minutes for the next 2 hours. The kidneys will process the dye and they should see less and less at each blood draw.
    Sometimes they put an IV in to facilitate blood draws, but you all know Cole's poor track record with IV's, so they decided to do finger sticks. At this point I let Del take him back solo for the finger sticks, since she made me do the blood draws. Del said Cole did great. The only thing he hated was the tech putting pressure on the prick and then he couldn't stand having the band-aid on. But that was one down and 3 to go. Cole played in the waiting area while every half an hour the tech would come out to get them. Each time the facial expressions on Cole's face got dimmer and dimmer. He began to learn what was coming. But the stick wasn't his problem, it was that dag gone Band-aid!! He would try desperately to pull it off, crying and fussing until is was off. He was so ticked off after the last one that he immediately ripped the band-aid off, blood was still readily coming out of the wound and he was slinging it all over the place. Del held his finger tightly for a few minutes, but those few minutes seemed like hours with Cole screaming his head off!! You think he was getting tortured.
    The last stop on the tour was the clinic appointment. Cole really likes the doctors and nurses there. Dr. Bucuvalas was very pleased with Cole and how well he is doing. He said his labs were a little higher, but he wasn't concerned because he had just a day before stopped an antibiotic that was for an ear infection. Plus Cole had the eye goo thing and even after we got back home, it came back for a few more days. Cole's AST and ALT were 92 and 76, but his GGT was normal. The only other wacky lab was his Alk Phos, which was a huge 1300. The highest it has ever been is 400. The doctor told us that they are finding out that this is often high when a kid is going through rapid growth. And Cole certainly is doing that. Just yesterday we went to buy the kid a new pair of shoes. The size 6's we bought a 2 months ago were too small. The boy is now in a 7 1/2!!!
    The doctor didn't really have much to say other than "He looks good." and we didn't have many questions, so he said, "See you in 6 months." That is when our next checkup will be, barring any developments.
    We had gotten done earlier than expected with the evaluation. We still had several hours to wait until our plane ride home. We went to eat at Panera Bread Co and then still had to sit in the airport several hours, but Cole was still charged up, running around and playing. He never slept on the plane either. But he crashed when we got home and slept the next morning until 8:30. All in all it was a good visit  with good results. Thank you God!!