I Always Knew He Was Special...

1 in 50,000 two year old boys will get Nephrotic Syndrome. 1 in 10 will not go into remission with Prednisone. I'm thinking I should send Luke into the Seven Eleven with a five dollar bill and teach him how to say, " I would like to buy Lotto tickets." I always knew my guy, Luke, was one in a million, but our latest endeavors with medication have his nephrologist, and his colleagues absolutely stumped. Luke's doctors cannot believe that they STILL have no detectable trace of Prograf in Luke's blood. They called the pharmacy to see if they were mixing it right, they called the lab to see how they were drawing the blood, and they asked me questions like, "Are you giving it on an empty stomach?" "Are you giving him antacids?" to which I answered yes, and no. Yes, he takes it on an empty stomach....Luke hardly eats at all!! And no...who gives a two year old antacids?

Sean and I are annoyed to say the least. He might as well be taking no medication at all, at least then he would eat normally and not have the horrid diarrhea, accompanying diaper rash, and what I like to call "random acts of vomiting." On Friday, the most beautiful day the mid west has seen in months, we decided to meet Aunt Katie, and cousin Natalie at the Arboretum. Luke wore shorts, Lexi wore a cute little sun hat, and we were very excited to get out of the house. On the way there Luke, who had been feeling fine and was excited to see Natalie, puked all over himself and the car seat. We had to skip the outing because his clothes were ruined, but he felt fine, this is what I mean by random.

One thing I've gotten from the online support groups is this: I am Luke's only voice in this situation. I know him best, and what is best for him. I'm sure all you Oprah watchers will know what I mean when I say that I am Luke's "health advocate." I called the nephrologist this morning and told him that I feel as if we are standing still. I want to discuss Luke's options and I want to turn this thing around. I don't want to continue the Prograf if it means raising the dose every two weeks, making him more sick, only to find it is not in his blood. Oh yeah, and did I mention that Prograf worsens kidney function? We are close to three months on Prograf, I think it is time to move on. The doctor was understanding and began discussing other options with me. Luke cannot go long without medication because the constant leaking of protein (which he has had for the last six months) will cause him to have chronic kidney disease, and eventually the kidneys will fail. The next drug for Luke may be Cytoxin. I've read a lot about it on line and have read other parent's testimonies on their children using this drug. It is not too much scarier than Prograf, but cannot be given for more than three months. After too much use the Cytoxin could cause problems with bone density, and Luke's immune system. Luke will most likely lose his hair, and need to get blood work every two weeks. I'm sure there are many other side effects. I cut the conversation short, realizing I couldn't make any decisions without Sean. We will meet with the doctor on Monday to discuss options, and decide what is next for Luke.

Again I must stress that Luke is happy. The rash is annoying, and the swelling (which I am getting better at controlling for him) is rough, but he is okay. He is thrilled with the weather getting warmer, and if his eyes are not swollen it is impossible to know he is sick.

The photos are of Luke texting on Nee's phone, Lexi in her sun hat, thinking we are going to the Arboretum, and the two of them on the swings.

Please pray for Luke to be strong and continue to breeze through whatever may come next.

An Expensive Bottle of Chocolate Syrup

Last week we found out that once again the Prograf is non-detectable in Luke's blood. The Prograf is flavored with chocolate and Sean and I are wondering if the "special" pharmacy we were told to go to is just selling us a $300.00 bottle of chocolate syrup (no worries...insurance covers it!) Anyway, Luke's dose has gone up to three times a day. It has proven to be quite a challenge because the doses need to be 7-8 hours apart and that means that one dose is either very late at night, or very early in the morning. Luke is very good about taking his "choco-licious" (a little name we made up for it), but when I wake him out of a dead sleep and try to shove "choco-licious" down his throat, he gets so upset that he ends up vomiting and doesn't get the medication at all. Instead of calling the nephrologist and having him suggest an IV three times a day (way worse than having to wake him up in the middle of the night), I have decided to try giving him a small glass of milk with the meds in it for the late dose. My thinking is that he will be so tired he will drink it and go back to sleep. He still uses a sippy cup and can lay down while he drinks, so this may work. Keep your fingers crossed! His next blood test is tomorrow, that is if we get the late dose in him tonight, because if we do not, then odds are it will not be in his blood come morning.

In other news, Alexa ran a fever all last night and will probably go to the pediatrician this afternoon. She has never had a single problem, other than hunger, in her 5 months of life, and was still a trooper all night long, just wanting to be held, and trying to sleep as much as she could. We knew yesterday that something was wrong because she was not her super smiley self. I think she secretly likes the extra attention from Mommy and Daddy, and may try to fake a fever next time she thinks Luke is monopolizing too much of our time!

We had an excellent Easter with both of our families. Alexa got to meet her Great Grandma and Grandpa Murray for the first time, and both Luke and Lexi made out like bandits when it came to Easter baskets. Anyone know what I can do with 9 pink and blue Easter baskets?

Please pray for Luke to continue to breeze through whatever may come next.

"My Eyes Arn't Workin!"

This morning I had to wake Luke up to take his medicine. This is not a pleasant task for me, but today it was much worse than usual. He sat up in bed, looked at me with two golf ball sized eyes, and said, "My eyes!" I was surprised to hear this because they have been swollen before and he has never said anything about it. "You are OK," I told him, and tried to get him to think about something else, like taking his medicine. He continued to cry and choked out, "My eyes aren't workin!" I realized then that the swelling had reached a new level of discomfort, and he could not open his eyes. After sitting upright for about 10 minutes the fluid started to drain a bit and he was back to seeing the world through slits, which suited him just fine. I knew he was content with the slits because he moved on to his next problem....his diaper rash. "I want to soak my buttsie!" was his next proclamation. The Prograf causes severe diarrhea, which in turn causes sever diaper rash. He has been starting everyday, and sometimes ending the day as well, with oatmeal baths, which sooth and calm his raw skin. In addition to the baths he uses soothing creams, and is sometimes given the chance to "air it out," which is scary for me, considering the new carpet, but well worth it.

My biggest concern with these side effects comes from the fact that Luke is going to catch on to the idea that he is sick. What I mean is that Luke does not know he is sick. Hard to believe, I know. The other day I was trying to get him to take his medication, and I told him that he has to take it because mommy does not want him to be sick anymore. He looked at me and said, "I not sick. No more throw up." he was referring to the stomach flu which he got over about a week and a half ago. So it dawned on me then that despite the blood tests, the doctor visits, the medicine, the swelling, the bloat, the diaper rash, and the slits that he is forced to view the world through.....Luke does not know he is sick.

We started another round of diuretics yesterday, and are hoping that he is feeling good for the Easter weekend. Alexa is well and growing like crazy. Every morning I look at her and think she is twice the size of the day before. She is the happiest baby I know and smiles and laughs whenever you look at her.

The pictures were taken this morning. They are hard to look at, but if you compare them to the first few posts, you can see that the "moon face" is going down a little because the Prednisone dose is so low. Look hard, this optimistic mom says it is so! I also notice that his thoughts are more clear and his imagination is more vivid when he is playing, and he is sleeping much more soundly, all because he is no longer in a "Prednisone cloud."

Please continue to pray for Luke to be strong and breeze through whatever may come next.