Still No Sign of the Prograf

This past week we were notified that once again Luke's blood shows no sign of Prograf. We have increased his dose and he is now taking three times more than his original dose. This new dose is really bothering his stomach, so along with the bloat he is also feeling a little sick. He is not eating much, and we pray that this medication will put him into remission soon.

Luke is going through a lot, but we know it can be worse, we could be on a donor list or taking far more serious drugs than Prograf. Luke's illness is teaching us so much about how fortunate we truly are. Because of this blog, and getting the word out about Luke's disease, so many people have reached out to us, and it is extremely heartwarming to hear from every single one of them. Whether it be a friend from years ago, or a distant relative, the encouraging words, positive thoughts, and prayers are not only appreciated, but are greatly needed. So thank you, thank you so much for thinking of my guy Luke.

The photos are of Luke with Luigi (a statue at my mom's house), and Lexi relaxing on Pa's shoulder.

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

A Hungry Boy

Luke finally stopped vomiting on Thursday. Late Friday I realized that his appetite was back. He was sitting on my bed watching Mickey Mouse, and I was trying to rock Lexi to sleep to no avail. She was crying pretty loud and Luke was trying to tell me something. He got frustrated and said, "Is she gonna stop?" I told him she would just give me a minute. She continued to scream and he continued to tell me something, which I could not understand. Finally he stood on the bed and yelled, "I'M A HUNGRY BOY!!!!!" He has been eating normal ever since and catching up on his sleep.

Luke did have the stomach flu, which we found out for sure on Tuesday at the pediatrician's office. On Thursday he had his biweekly blood test, and we did not hear from the nephrologist, which means his levels are good to continue the prograf. Also, on Thursday, Lexi received her four month shots. Thursday was a fun day..... The four month appointment went well for Lexi and of course Sean and I ended up discussing Luke at Lexi's appointment. Yes, Lexi tends to get over looked, but when it comes to doctor's offices that is probably how she would prefer it.

Luke woke up this morning with golf ball size eyes again, so he is back on the diuretic as of 11:30 this morning. We hope relief comes quickly and pray for an end to this frustrating and vicious cycle.

The photos are of Luke hanging by his "sick couch" where he spent most of his time with the flu, and Lexi gearing up for Easter.



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

The Difference a Diuretic Makes

The photo on the left is what Luke looked like on Saturday, the photo on the right was taken on Monday. The new diuretic delivered some much needed relief, but it seemed to have come with a price. On Saturday morning Luke received the new diuretic. On Sunday morning he looked like the picture on the right, but was vomiting all day and night. At first I thought it was the diuretic mixed with his Prednisone and Prograf, but have now come to realize that he had caught some type of stomach bug. Today, Tuesday, we are going to the pediatrician. I'm thinking it is the flu, but better safe than sorry. He has gone three days with no meds, which may have set us back with the Prograf, but will not hurt him in any other way. According to the nephrologist he Prednisone taper is at a low enough dose now that he will not suffer withdrawal symptoms if he misses doses. I am hoping we could just stop taking it, but of course we will do what the doctor suggests.

Luke looks really good, of course this is because he has thrown up everything in his body so there is no fluid to retain. I wish I could say this is what he looks like when he is not sick, but the truth is we do not know what he looks like. Since the start of this whole mess Luke has grown, and aged. The jump from age 2 to 3 is huge for a child, and their looks change during this time. So, when the Prednisone is stopped for good, and all the swelling goes away, we are not really sure what Luke will look like. Pa (my dad) once remarked that it is like he is frozen in time. This is truly how I felt. Like we were hitting the pause button until he went into remission, and then we could go back to our normal lives. This is our normal lives! I often have to remind myself to have him live his life as if he is not sick. I cannot keep putting things off and planing things for when he gets better, because it could be weeks, months, or even years. I need to teach him to live in the moment and do all the things we want to do when we want to do them.

Hopefully the flu subsides soon and no one else catches it! I do have to report that we lost Nemo. Luke has not even noticed, and even told Nee he has 3 fish?! Uncle Jimmy wants to buy a new Nemo, so maybe Luke will never catch on.

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

Not a Big Deal

This past week Luke has been very swollen and the diuretic has not delivered. His eyes are tiny little slits, and all black and blue, and his stomach is sticking way out. He is irritable and can't play like he wants to. I called the nephrologist yesterday and told him that Luke was very uncomfortable and eating almost nothing. When Luke is bloated he has no appetite. The nephrologist sent Luke for more lab work (good times!), and then prescribed a second diuretic to take on top of the first one. This new one is serious stuff! We need to push the bananas and orange juice to avoid loss if potassium, and watch him closely for dizziness and dehydration.

In addition to all this he has a little cold, and I'm not talking about the fish. He is congested, which doesn't bother him too much all day, but of course gets worse when he lies down to go to sleep.

Luke is still in good spirits, and barely cried at his lab work today. He has gotten two new trains out of the deal! He also ended up with 2 fish and a new tank instead of the glass bowl we originally had (thank you daddy!). In addition to Cold, we also got Nemo. I suggested that one of the fish was Lexi's and he gave his usual response to Lexi moving in on his fun..."Yexi is too yittle." Translation: Lexi is too little.

In other news Yittle Yexi will be eating food for the first time today. She is four months this very day and will get a teaspoon of rice cereal for dinner tonight. Let's hope it ends up in her tummy and not all over mommy!

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

"Mommy don't touch it, its not a big deal!"
-What Luke told me when I asked to see the boo boo he got from the blood work this morning.

Non-Detectable Prograf

Luke had his first bi-weekly blood test on Thursday. Sean was able to bring him this time because he is working afternoons. Sean reported that Luke was very strong and brave, and only cried a little. He has come a long way from having to be restrained due to kicking and screaming. The blood test had very peculiar findings. The nephrologist called the next day and said, "the Prograf is non-detectable, believe it or not, Luke must be metabolizing it very quickly." So now we will have to up the dose, and I am concerned that the side effects will now rear their ugly heads. It has been three days of the higher dose and Luke has vomited once. We are not sure if this was from another drop in the Prednisone or the higher dosage of the Prograf. All in all he is doing fine.

Tomorrow Sean is bringing Luke to get a new gold fish. We lost our last fish when we first moved to the new house. Since Luke has been asking again about the empty fish bowl we decided he could finally get another one. This morning Luke informed me that the fish's name will be "cold."

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

A Possible Cause

Luke continues to do well on the Prograf. The kidneys are still leaking protein, but the medicine is agreeing with him and he is feeling really good. Like I have said in the past, I love to write, especially for an audience, but no news is good news. This blog has done a lot for us in the communication department, but it has also led me to some interesting information about Nephrotic Syndrome that I had never heard of before. Of course, I am no expert by any means, but once you get into the support groups, and spend enough time in a nephrologist's office, you would think that Sean and I would have at least touched on every aspect of the disease that is ailing our little boy.

I was online reading about Luke's condition when I decided to google some key words to see if my blog would pop up. I had never seen something I had written come up in a search engine and thought it would be a neat thing to see. I googled "Luke" and "Nephrotic Syndrome." Yes, my blog did come up (very cool), but I also stumbled upon a very interesting article about a boy named Luke. The article was actually a letter written to Dr. Green. Dr. Green is an online doctor that you can write to about medical concerns and he will answer you back. Is Dr. Green actually a doctor? I have no idea, and would never look to an online doctor to treat myself or my children, but the letter and the response were both worth reading. The letter was from a concerned father whose son, Luke, had knocked over a bee hive and was stung 30-40 times. The boy got a terrible rash all over his body, and then got very high fevers. The father went on to ask Dr. Green if there was anything else he should be worried about. He was assuming that his son still had a high level of bee toxins in his body and wanted to know what else to look out for.

Dr. Green's response blew me away. With my mouth hanging open I read all the things that this boy could get from the bee toxins. One of the things that this particular Luke needed to worry about was Nephrotic Syndrome. WOW!!! I was, to say the least, in shock. Why so shocking? Well, this past summer Luke got stung twice in the hand and once in the side of his torso. He then had a horrible rash all over his body, and then high fevers for about three nights in a row. When he had gotten stung I took him to the ER because I did not know what was normal, and what was not. He had a little swelling around each sting, but no other symptoms so they said he was fine and sent us home. A little later he got a terrible rash all over his body. I took him to the pediatrician three times while he had the rash because it kept changing and never seemed to get better. At the first visit I was told he had Summer Eczema. At the second visit I was told he had Hand Foot and Mouth Disease. At the third visit I was told it was an allergic reaction, and I would never figure out what it was. We were given medicine, and the rash finally went away. A week later....high fevers three nights in a row. He had no other symptoms at that time, only the fevers. They tested him for Leukemia, which he did not have, and summed it up to his body fighting something off and then he was fine. Never were any of these issues linked together, although they were all in his chart, even the bee stings, because he went to the ER. I figured this was a bad summer for him and thought nothing of it. Then in September right around his 2nd birthday he got a virus and was vomiting with a high fever. All along we have thought that this was the virus that triggered his kidney disease, but never did we think the events of the past three months had also been connected.

We cannot know for sure if it was the bees or not. It would be bitter sweet to know the answer to this question. If it was the bees then Sean and I could put to rest the guilty feelings of wondering if we had unknowingly exposed him to something that had harmed his little kidneys. We have wondered about everything from vaccinations to formula to me skipping a prenatal vitamin or two while I was pregnant with him. We could also put to rest the thought that this could be genetic. We could stop worrying about Lexi getting it, and know that he can go into remission. On the other hand if it was the bees then we need to forever be afraid to play outside, and I might find myself dressing Alexa in a suit of armor to play with her friends! We plan to discuss these findings at our next nephrologist appointment. Not that this could help cure him any faster, but it definitely takes a load off of our shoulders.

In other news, Alexa is holding her head up and getting bigger and stronger everyday. Sean has started working afternoons. He leaves the house around 1:00 pm and gets home around midnight. Luke is loving all the playtime with daddy, but is not happy about mommy having to put Alexa to sleep, and not lay with him when it is time to go to bed. He says, "daddy do it!" as soon as I start to rock her to sleep, and I have to remind him that daddy is at work. Thank God Alexa goes down fast and stays down all night!

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

"Some people think that doctors and nurses can put scrambled eggs back into the shell."
-Dorothy Canfield Fisher