I know it has been a while since my last post, but there has not been too much to share. Luke's last blood test showed Prograf in his blood, which is reassuring to us that this drug could possibly work. Luke is urinating more and needs diuretics a lot less, this of course is good news, but the protein in his urine is still as high as the test can test for. We will continue with the Prograf for a couple of months and pray that we will not need to go onto the next drug which is a chemo drug.
Luke is still in good spirits and not at all held back by his disease. We were in California this past week, we had a great time, but learned that traveling with a two year old and a 6 month old is more work than it is worth. When boarding the plane in Chicago Luke revealed that he is terrified of flying. I had no idea. He threw himself on the floor and was screaming while all the other passengers walked past us to bored. A member of the flight crew talked him into boarding and we somehow made it to California. Luke's new found emotion, fear, reared its ugly head again in Disneyland when Luke refused to go on many of the rides. His favorite parts of the day were meeting Mickey Mouse and having ice cream. The day before we were to fly home Luke got a fever and complained that his ear hurt. He had been on a low dose of antibiotic, so I was surprised that he could be getting sick. Knowing full well that you cannot fly with an ear infection I had to get him to a doctor to look at his ears. Our host for the week, Uncle Nicky, took Luke and I to the nearest emergency room and on the way Luke puked in Uncle Nicky's car. The doctor ended up saying that Luke's ear was slightly red and swollen, but to fly home tomorrow before it got any worse. I was scared about the pain he might experience taking off and landing. The doctor said to give him Tylenol and make sure he drinks going up and coming down. As we were about to board the plane home I gave Luke the Tylenol and he immediately puked all over himself, Nee, and me. So now he would take off with no pain medication, great!! The good news here was that he walked right onto the plane and was not scared to fly anymore. Then when we took our seats he passed out right away, and never complained of any pain. We are home now and very happy to be here. I eagerly await Alexa returning to her old schedule, which I am sure will happen soon.
In other news, a very good friend of mine had a BBQ on Saturday and collected donations for Nephcure, a foundation researching a cure for Nephrotic Syndrome. We raised more money than I could have imagined and will be sending it to Nephcure in Luke's name. Thank you to all who donated. I am hoping to get more fund raisers going in the near future.
The pictures are of Luke looking a lot like his old self, and Luke and Lexi wearing the ears Nee bought them in Disneyland.
Please pray for Luke to be strong and continue to breeze through whatever may come next.
