Ben's results all came in today...they are ALL normal. Both the LP and the CT. So, no kidney stones, and no markers for inborn error of metabolism. We are completely befuddled as to how to feel at this moment. There a lots more calls to come to decide what to do about meds, so maybe more info will come in. Unfortuantely, Ben had numerous episodes last night that looked like brief siezures to us. Not good.

Teena

We didn't get any calls from Children's today, so I expect to hear from them tomorrow. I did let the nurse know our thoughts on Maple Syrup Disease so we can get that ball rolling before Ben's appointment May 13.

Ben seemed to have a lot of pain this morning, so I ended up giving him Tylenol. He then took a three hour nap. Apparently the last several days have taken their toll on him. On me as well, since I took the opportunity to nap as well. He seems much better, and is no longer complaining about pain, so here's hoping whatever stones there may be have passed at last. He is cheerful, giggly, and wanting to play. We haven't seen him this happy in a long while-since before the seizures spiraled out of control. I'm sure being less druggy has a lot to do with it as well. We'll take it, either way!

One thing I didn't mention-Ben's buddy Jennifer of the kidney problems was also in Children's radiology at the same time as us yesterday. We were really hoping to see each other-who knows, it may comfort the kids to see a familiar face in such an environment. Unfortunately we never managed to connect.

Megan woke us with the lovely news this morning that the shelf in the dishwasher finally broke last night, so I have been hand washing dishes. Parts have been hard to find, but the search will be on again this weekend. It seems it never ends.

Teena

Dave just got home from picking the kids up....and our car got hit in the parking lot. It's dented, and will have to be fixed. Unfortunately, Dave and the kids saw it, and Megan is pretty freaked out by the experience. She is feeling a lot of stress these days, it is all taking it's toll on her tender heart. We would really appreciate your prayers on her behalf.

The CT scan was actually pretty painless. We got in fairly quickly, and Ben did great going off to sleep. They hoped he would sleep for at least half an hour, ideally an hour after the procedure. Ben woke after 15 minutes. He was in a pretty good mood, however, and excited to ride in the wheel chair. We had to stop at the pharmacy on the way out, and the line was huge. When at last it was our turn, they didn't have Keppra ready for Ben, they had Leviratacetam, the drug that landed him in the hospital last time. I'm afraid I kicked up rather a fuss, and told the pharmacist to call the doc. She will, but of course, we have to wait. So I still get to make 2 trips to Children's this week.  We should get results from the CT tomorrow afternoon. Ben does seem to be in pain today, but he may just be hungry since he had to fast before his procedure.

I have some rather gross details to share about a new development. A month or two ago when Dr. Mark was going over Amino acids tests, he asked me if Ben ever had urine that smelled like maple syrup. What???? No, and who smells urine?  However, the last few days, guess what? Ben's pee smells astonishingly like maple syrup (yep, gonna have to think twice next time I have pancakes). So I looked up Maple Syrup Urine Diseas(yes, really the name) and the symptoms all fit. It is usually diagnosed at birth, but occasionally people slip through the cracks to later in life. Those people generally develop seizures.I quickly shot off an email to Dr. Mark, who told me he had noticed the smell with Ben's last sample, and also the color and consistency were odd.  I also found a specialist and sent a quick email to him, asking if Ben fit the bill in any way, and what our next steps were. I am still trying to figure out who to contact at Children's to give these details. I think the nutritionist, who is at the conference with the epileptologist, which is why the medication chaos occured yesterday.  I've included the link in case you want to check it out-

 http://ghr.nlm.nih.gov/condition=maplesyrupurinedisease#treatment

Teena

It seems there has been a medication mix-up. The neuro  spoke to when Ben was discharged told us one dose of meds. The neuro we spoke to today told us another dose of meds. Once again, somebody screwed up. Dave assures me it wasn't me since I called TWICE to be sure we had it right. The NEW plan is to wean the mix-ed up med altogether. I'm torn between sick to my stomach and basic freaking out. Ben still has to go in and have his kidneys looked at, since that seems to be unrelated. There's a mix-up there, too. Dr.Mark says the orders are in, and now we wait for an appointment. Children's says there are no such orders. I have all this adrenaline(I hate medication) and I just get to sit by the phone. ack!

Teena

Megan picked my title today-we think it's a pretty good one.

Let first say, the kids were great in their play yesterday. It was exhausting for all of us, but we made it. Nate was a fabulous Dizzy Deano and announncer. He loved using the mike and doing the echoing voice overs. Many people mentioned  that he's a natural. Yep, Dave and I have a attention seeking ham for a kid-big surprise. Megan did great in her role as a spirit squad. They actually did some complicated dance moves, and she hung right in there.  I was pleased to see that her time spent in cheerleading classes was put to good use-her form was perfect. The whole experience was really, really fun. Ben was even able to sit through some of it, so Dave and I got to be proud parents together, if only for a moment. 

We had a little gathering at our house after, with Jim and Heather and Dave's mom and her friend Sue. We were enjoying socializing, and pretending we didn't have to decide what to do about Ben.  Finally we got Dave all packed and ready to take Ben, and he decided to call to be sure all was in order at Children's. Thank God he did-not all was in order. In fact, they had lost all of the orders and information Dr. Mark called in the day before. <insert several increasingly frustrating calls here> Dr. Mark is at this moment trying to make arrangements to get Ben in for an ultrasound and CT scan today. After viewing the color of Ben's urine this morning(not nomral, anyway), Dave and I have decided no matter what happens, Ben needs to be seen-TODAY. We've seen enough episodes of House to know that brownish urine is bad. It may simply be long term effects of mild dehydration, but even so, fever lasting a week is a good reason to get checked. so I may head to ER with him later. My mom is free today, and agreed to have Nate and Megan at her house, conveniently near Children's.

We've decided to keep Ben home from Kindermusic today. I want to be available whenever Dr. Mark can get an appointment, and Ben feels crummy anyway. So we'll be home, waiting by the phone. I'll update as soon as I know anything.

Teena

I wish I could be all philisophical and clever, or at least interesting. I'm afraid, however, that the saga continues. Dr. Mark called with test results today. Ben has blood in his urine now, but no white blood cells that would indicate infection. Something is irritating his kidneys, and we're going to have to have a CT scan and a sonagram to see what the problem is.  It is most likely kidney stones or his meds are just sitting in his system, and his body is not able to filter them. In the interest of the other two children, and since Dr. Mark said this was not an emergency, we are waiting until after Nate and Megan's play tomorrow to take Ben in. Mark says Ben is ok as long as he keeps on peeing, so I guess we'll keep an eye on that to decide whether he goes tomorrow or Monday.  Both days come with numerous conflicts, especially if Ben is admitted. David, of course, has a big new project starting Monday. One we have been praying and praying to come through. Bizarre blessings.

Megan had a lovely time at her party last night, though she is a bit tired today. Both kids are looking forward to the big dress rehearsal tonight. Nate even let us cut off the faux-hawk in honor of the big event.

I should also mention here that Nate FINISHED HIS AWANA BOOK THIS WEEK!!!!!!!!!!!  Despite it all, he has earned his Timothy award. We are so very proud of him and his hard work. I'll have to look up how many verses you memorize to get a Timothy. I thinks it's 360, but I'm not sure.

Teena