Ben had a rough day, and a really bad night. We finally had to wake him in an effort to get some control. His Ketones are back in the high range, and we're not certain what kicked this off, but we're really praying this is a brief setback, and not a three week one.  It's 4:30AM, and I've got to keep a very tired boy awake for at least an hour.

Teena

Last night was pretty bad for Ben, short seizures every 15 minutes to half hour from 4 on. He had three more after waking. Once I finally got his Ketones, they were pretty low, proabaly due to some Mango I gave him yesterday.  It does seem that Higher Ketosis is keeping his seizures in chekck-that's something.  We also tried doubling the Rescue Remedy, which could have contributed. It did not contribute to his falling alseep any faster!  We plan on leaving it out tonight and seeing if things go better.

In light of starting the Kindermusic class, and needing to make our inusrance benefits last as long as we can, we have decided to only do OT every other week. Jonathan was a little surprised at this decision, I think he was disappointed because he's finally making progress with Ben.  Ben actually painted a picture for him yesterday.  In fact, Ben is playing with clay, participating in home science projects, and coloring. It never ceases to amaze us that Ben seems to have developmental spurts in the midst of some of the worst of what he goes through.  I suppose that is God, encouraging us.

I still haven't heard back from the hospital about the 24 hour EEG, so I guess Ben won't get in as quickly as anticipated. 

The big kids and I did a history project today...We made an authentic Mexican breakfast-huevos rancheros and Mexican hot Chocolate. We even made the refried beans oursleves. It was great fun, and the food was to die for. Poor Dave is working a lot of hours right now (oh,we are so,so glad!) so he missed out. The kids had such a good time, we plan to repeat the performance next Saturday. 

We are all really enjoying the day at home. oh, so peaceful. The phone isn't even ringing! I finally got all caught up on making arrangements, and haven't had to do any "business" all day. The kids are all outside enjoying the sunshine, and I think I will go indulge in a bit of reading.

Teena

As time marches on, we are starting to think more about the implications of Dr. Marks' diagnosis. Again, this is not an official diagnosis, but Dr. Mark is sure we need to look at Inborn Errors of Metabolism. I keep thinking about the dietary changes I mentioned yesterday. Though this is not the only possible treatment, it is the most likely one.  So I looked it up and will post the link for you. Notice that all of the different diets have opposite focus-ie some are all carbs, some are all protein, some are all veggie....I wonder which one will be best for Ben? am I even close?

http://www.faqs.org/nutrition/Hea-Irr/Inborn-Errors-of-Metabolism.html

Last night was strange. Ben is having some side effects from raising the Keppra. He is more hyper, and can't settle down for sleep. (hey, he stopped biting , so we're counting our blessings). We tried this Bachs' Rescue Remedy, and while it calms him, it's not making him go to sleep (note to self-email dr. Mark and see if we can give more). Last night he'd been alseep about an hour when he threw up...in Dave's laundry basket with clean clothes...ok, we got the clothes dumped out, but there was splashing, and I am doing laundry AGAIN today. He threw up one more time, and slept like a baby until 6:30. Four siezures today, they look different again. In case you wonder why I document how many, Dave and I end up looking these things up nearly every time we have a meeting with a doc, or every time we get in an argument. Either way, it's good to have documentation. Ben is fine today, BTW.

The big kids had HZ today, and I signed them up for another session. Next session has rock climbing as the cetral theme, and they can hardly wait.  Both kids are hard at work finishing AWANAs, Meg is going to have no trouble, Nate has 24 chapters left to go...with 10 weeks to do it.  They are both practicing their parts for the upcoming play. They tell me it will be in April, though I don't have an official date yet.

Want to hear something amazing? We don't have anything on the calendar for the next three days. WOW! I love it. (Ok, there is a women's meeting at church on Saturday, but I'm not sure.....I don't think I've made any of them since September.) The beautiful part is, we still have some dinner left from what Chris and Danya brought last night(steak-yum!) and our first meal from church came last night, so I don't have to cook for a couple of days! aaaahhh! <- that is meant to be a sigh of relief, not a scream of terror

Teena

Ben had another pretty decent night. 5 Seizures, I think, and none of them very severe. The Bachs remedy definitely helps him calm down, but not sleep. I wonder if I could use that during the day?

Today I am wondering if I ought to call Dr. C and find out what the plan is for a 24 hour EEG.  I thought he was going to call on Monday. On the other hand, I am so overwhelmed right now, if it took some time, that would be easier. On the other hand (?!) Match is crammed full of appointments and phone conferences, so there is no easier time for quite a while.

We went to the pre-op appointment this morning. I have to say, Children's does do a really good job of keeping to the schedule. We went in, saw two nurses, Nate hung out in the waiting room and Megan went to the sibling play room and we were done in half an hour. Pretty painless really. It was a great comfort to discover that aside from the fact that they feel the need to sedate Ben to get him to calm down long enough to well, sedate him, they do not anticipate any problems. That was really reassuring.

Dave's sister and her husband are coming over for a while today to bring us a meal and help me clean. I'm afraid it's a necessary evil right now. I am spending about 2 hours on phone calls most days, plus about an hour on the computer returning emails. This is just the stuff I am doing to manage Ben's care.  I feel like I am drowning under the to do list.  So a HUGE thank you to Chris and Danya for volunteering to bail me out. Thanks guys!

Dave is suddenly really busy at work. We are so, so happy to have him working again! However, this creates a new kind of stress-we are both struggling to come to terms with the fact that Ben really, really does have a life-long, debilitating illness. It may be manageable, but will always be a part of who he is.  Now that we are on this road, we have to stay on it, and it is a long, long (think 2 years) process of confirming diagnosis. We will most likely have to change his diet again(huge intake of breath) and it will still be a very challenging one...with limited amounts of protein. Even thinking of taking on a new challenge makes us both curl up in a fetal position.  So please, praise God with us that Dave is working, but pray with us that we can let go of the stress and let God. We're not so fabulous with that this week.

Another praise worthy note-the church found someone who is willing to clean my house chemical free a couple of times during March! If you could see me, you would know I was jumping up and down.

Teena

Ben didn't have quite as good of a night as he has been, but still only five seizures. This is such an improvement over where we were, I can hardly complain.  He's doing great during the day. Last night we tried a new supplement called Bach's Rescue Remedy, to try and help him sleep. He didn't go to sleep as quickly as we hoped, but he was much calmer and therefore manageable when Mom and Dad are tired.  The potty training is still going really well, it's a rare thing for him to have an accident.

Dave and I are still trying to apply what we learned yesterday(does everyone else hear that Veggietales song in their heads?).  Here's what we have come up with.......Ben does, and always has, have a GENETIC disorder. He was BORN with whatever is making him sick. Nothing we have done, or could have done would have made any difference. That is so huge, I can hardly get past it. It changes our view of everything that has happened, and colors all those strange little incidents that seem to follow Ben through life. It truly takes my breath away as I think on it. I confess, I must say a huge nyah, nyah, nayh, nyah to the first neurologist we took Ben to, who said all those horrible things to us. I now have medical evidence that he was totally wrong. That is very refreshing. 

On thing that didn't get mentioned yesterday is rather disconcerting. According to current test results, (remember we need second test to make results "offiical" and then we have to figure out which IEM he has) it almost looks like Ben has TWO different IEMs. Since this is a statistical impossibility, Dr. Mark has settled for looking for a second birth defect. There is more than one system malfunctioning in our poor little Ben. When you think of it that way, it's amazing he's doing as well as he is. I actually feel grateful-this journey could be so much worse. The problem is, until we learn how to manage the IEM, we cannot find the other problem. We have to clear away the issues of the IEM to see what else is going on. This is the part where we wait, and wait, run some tests, wait, run some more tests, and wait.  It is going to take patience, and lots and lots of time. There's no way around it.

Today the kids and I have nothing to do but complete some school work. That feels so wonderful! I am, of course, still taking phone calls from Children's. I just got one from GI, and Ben's MRI/endoscopy/possible colonoscopy is scheduled for March 13. That is a really inconvenient day for us, but we can't really move forward until we have those done, so there it is. I will have to shuffle and pray, a lot!

Teena

I've scarcely completed the blog, and I heard from Children's that Ben need a pre-op anesthesia appointment. Tomorrow is the day that works. sheesh. 

Let's start with the good news-Ben is having trouble getting to sleep at night, however, he only had two seizures again. This feels like bliss to us. After a consultation with Dr. Mark, we are not going to try Melatonin any more, but will try Bach's Remedies, a natural herbal sleep aid.

The other good thing that happened is Ben had his first Kindermusic class today. He did GREAT!  He was engaged and able to participate in every activity, with very little help from me. He loved all the singing and instruments, and especially watching the other kids.  He very carefully imitated what they were doing. The part that amazed me  was that he fit right in. His behavior was as good as the other kids (3-4 yr olds) as was his attention span and ability to follow directions.  To put it bluntly-none of the other moms were staring at Ben or me out of the corners of their eyes trying to figure us out.  This is unusual in a new environment, and very refreshing.  All in all, it was a great experience, and I have signed Ben up.

I am still waiting get both phone calls back from Children's, but Dr. Mark did call.  Again with the information overload, and I don't quite know what to do with all this information, bu there it is.  Ben almost certainly has an Inborn Error of Metabolism. Mitochondrial disorders fall under that categaory. Unfortunately,  there are hundreds, and narrowing it down is going to take some time. Several of the Amino Acids that are out of balance in Ben can cause seizures, so we are going to look at those one by one.  There is some evidence that he may have kidney stones (a side effect of Most AEDs or Anti Epilepsy Drugs). We hope to test for that soon.  There is also avidence that Ben has a systemic fungal infection (like yeast, only different). There is also some eviedence that the fungal infection may be in his brain(see, I am not crazy! I knew there was some sort of brain infection that Ben could have!)that requires a 6-9 month round if Nystatin. Interestingly, the last time Ben was on Nystatin his seizures got better, but as soon as he went off, the seizures got worse again.  I plan to address these thoughts with Dr. Mark in an email and see if we can start treatment right away.  We also discovered that many of his out of balance Amino Acids are also attributed to B12 and B6 deficiency...just not the kind of B vitamins he used to get in his injections. Dr. Mark wants to revisit that, but really doesn't want to mess with Ben until after the MRI. He agreed that an MRI and the endoscopy were medically necessary, and the information we will get are worth the risks of putting him under  anesthesia (personally,I find the thought terrifying).  We discussed so very much more, but I'm at the end of what I can process today. Mostly good news, Praise God!  We still have many options of where to go from here, and that feels so good after shooting in the dark for so long. Not a diganosis, but we have found the right family at last. Oh, and we definitely will have to do genetic testing now, but not for a while.

Other good news is that  Jan Hunter, whose name I totally mangled yesterday, called today and has arranged for us to have meals three days a week during the month of March! One thing that happens when you spend the day at the hospital either running tests or getting daignoses, is you come home so brain fried, even figuring out a simple meal becomes impossible, and I have to think of three variations of each meal.  With all we have going on next month, just heating something will be a blessing. The last two weeks have been rough in the meal department!

I feel strange...almost lighthearted....

Teena

Ben had no seizures until 5 AM today, and then only two in three hours. We all slept well, and feel better today.  I think this bad round has passed, now we are going to wait and see if this is the raise in Keppra, or just coincidence. We are just so thankful for the reprieve! We plan to take it very easy today, and just rest.

teena

This morning at church I was approached by a woman who receives all our prayer requests for Ben. She has been so touched by our story that just meeting me face to face made her cry.  This really meant a lot ot me, to have a stranger so emotionally involved in Ben(yes, I know there are many of you-thank you so much for caring about us!) she wanted to know if there were any physical ways she could help. While I have not been actively praying about this, is has been a concern on my heart as things get busier, and busier, and we spend more and more time at Children's. I am horribly behind on both cooking and housework, when I am not managing seizures or other care issues, I am too emotionally and physically exhausted to care about the house. So this was an answer to an unspoken prayer. I swallowed my pride and admitted to needing help. She(Mrs. Hutcherson-no relation to my pastor-I didn't catch her first name, terrible, I know. I was experiencing a deer in the headlights moment) is going to arrange a couple of meals a week, and see if she can find someone to help with housework every now and again. David's sister and her husband have volunteered to come this week and help out, and bring us dinner, so we get a break this week as well. We are getting some lovely sleep, but a new kind of exhaustion is settling in as it dawns on us what we are facing in the coming months.

I, of course, continue to be insane, and signed Ben up for Kindermusic. It is my heart's desire that he be seizure free on Mondays, from 10:35-11:00 so Ben can participate in this class. I'm not totally insane-this teacher works with children with developmental issues, and music therapy is the most effective therapy for non-verbal kids. I think we are at the end of our benefits for OT, so this is a good alternative while I figure out how to get more benefits from our insurance company. Tomorrow is our trial class-if all goes well, we will commit Ben to the class for 6 weeks.

Tomorrow's schedule-first Kindermusic class, call from Children's letting us know about the possibility of starting Ben on steroids and getting him in for a 24 hour EEG, conference call with Dr. Mark letting us know the details of Ben's most recent Amino Acid tests, and what they mean, I have to call Children's and schedule Ben's MRI and endoscopy. My friend Julie is coming into town-I plan to collapse and let her handle anything else that comes up!

Teena