Last night Ben had seizures every three seconds for a period of time, then nasty ones from about 4AM on this morning.  Around 6 this evening he had one lasting 4 minutes (an eternity in seizure time) and was post ictal afterwards…a very bad sign. We’re not sure what’s up. Dave and I discussed it in circles for about an hour tonight and finally came to the conclusion that we have NO idea what is going on. We got worried about putting him to bed and have put a call in to the neurologist to see what we ought to do about meds.  Rescue meds are all the valium family…which is Lorazepam…which we are weaning off of. So we decided to let the guys with degrees tell us how to handle this one.  Hopefully, they’ll have a solution that works for everyone, but most especially Ben. Sleep deprivation is now a concern.

Thank you for your prayers!

Teena

1. Ben had a somewhat better night last night

2. Ben had a GREAT day! He was very calm…he stayed in one place and played for several minutes at a time, or just sat and looked at books.  I actually got some things done today.

3. It appears that the swelling in his face is at last going down.  We’ll keep praying that we are finally on our way.

4. Ben signed mom today. This made me very happy.

5. I also discovered that Ben has a special sign for his OT, Maria. Every time I said her name, he used it. This is cool-he’s starting to expand his language.

6. Ben told Dave today that he needed to go potty. Yes! We are making progress here!

Teena

We headed out this weekend as a family to visit with Dave’s parents in Yakima. We were also able to see Dave’s brother, who was also in town.

First let me say, Ben was really, really good. We were so excited to have him able to stay in one room with us.  We even got to sit down and have grownup conversation! I think the best part was I actually got to have some real conversation with my mother in law.   Nate and Megan were a huge help, as always. We have three amazing kids, and weekends like this make us so very thankful.  David plans to make another trip to Yakima this coming week, but this time the kids and I will be staying home. It’s a busy, stressful, and difficult time for Rick and Terry as Rick continues his battle with cancer. Please keep them in your prayers.

We did have one frustration, and that is that Ben’s seizures took a big leap in intensity and frequency.  The nature of the seizures keeps all three of us from sleeping. The last two nights have been bad ones, and Ben woke this morning at 5, and yesterday at 6.  We’re not getting enough sleep. I’m also concerned about the swelling that still encompasses Ben’s face, though his chin is now distinguishable.  Unfortunately, the odd brown color is present in his urine again as well.  I plan to try for a urine sample tomorrow(easier now that he’s mostly potty trained again-yay!) and take a sample to both Dr. Mark and the urologist at Childrens. Let’s see what we get back-maybe something useful if the conditions are right. I’m also hoping to get Ben back in to see Dr. Mark this week and re-evaluate what is going on with him.  I admit it-I’m worried. I don’t like new symptoms…

The last couple of days have had some of the highest highs, and the lowest lows.  We’re hanging in there, but as a family are feeling pretty worn out. Isn’t it time for a school break again?

Teena

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I think that’s an accurate summary of life with Ben.  Last night seizures were startlingly bad, after a run of milder nights. Because it was so difficult, I anticipated a rough day with Ben as he recovered. Instead, he was much calmer today, playing by himself for up to 15 minutes at a time.  We’ve also been dealing with some pretty major aggression issues, and today there was almost nothing.  I’m hoping all of this is a result of the end of the most recent round of die-off.  The rash is finally gone from his face, and the boated tummy is gone(which always looks odd on his thin body).

Because of last nights seizure activity, we decided to stop the Benadryl. It had little, if any impact on the swelling in his face. I am praying that the overall change in him today will also result the swelling going down-I’m totally at a loss of what to do. A general consensus has been reached that we can now see his chin-but the rest of his face is still very puffy and mis-shapen.  I’ve just realized that I meant to make an appt for next week with Dr. Mark next week and I forgot.

I ran in to Dr. Mark this week, and he let me know that finally, all of Ben’s records are moving to the NIH.  It’s coming along, and we’ll see where this leads. Next week’s project will be putting together an evidence log to support our suspicion that Ben has a mitochondrial disorder.  I can’t remember if I mentioned here that our Nuro team is supposed to diagnose mito-so I’m not sure why ours hasn’t.  We’ll keep on moving until we at least get some answers I can hang on to.

In the meantime, Nate’s busy with drivers ed-we’re doing a lot of driving these days.  Megan has most of her lines memorized for her play and is busy practicing her blocking (gestures and stance while reciting lines.)  Dave and I just keep trucking a long-it’s a very busy time.

Teena

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It’s true-I am losing track of time, it’s been so busy.  Last night Nate started drivers ed, and parents are asked to attend the first one. Turns out, we get a refresher course, and some very helpful info on how to teach our kids to drive. So add some driving/teaching hours to my schedule.

I have also decided to stop waiting for Ben’s “mumps” to clear up.  I’ve spoken to a few health representatives recently, and since Ben is not in an emergent state, no-one is getting too worked up….except me. This is not natural, and Ben’s pumpkin head is disturbing to people who have not seen him yet.   After careful consideration, I decided that the only “new” thing Ben has been exposed to has been a new, non-organic oil that was a trusted brand….it’s sunflower oil, which I’ve often used in the past, but not in large quantities…I don’t even know it’s the oil, but it’s the only “new” thing I can think of, or am aware of.  So I pulled the oil yesterday (and the eight meals I had made with it. *sigh*).  Then I took a big risk and began giving Ben Benadryl every four hours.  No change this morning, but as the day wears on, I am almost certain that the overall swelling has gone down.   Tonight will tell us whether Ben tolerates Benadryl in terms of seizures, and tomorrow should indicate whether or not this is an allergic reaction.  Then we just have to find out if it’s really the oil, or if some new ingredient has sneaked into one of our regular products.  Ugh. This could take a while. I have been praying that God would just tell me which thing to take out so that poor Ben doesn’t have to suffer any more.   I’m pretty sure at this moment that he never had mumps.  That never set very well with me….time will tell.

I’ve made some important decisions about next school year. It’s never too early to start thinking about next year, believe me. I am pulling both Ben and Nate out of Northport. Nate because it’s a great deal more work than it’s worth to keep a highschooler in the program, though we are thankful for Northport paying for half of drivers ed.  But I am no longer making the decisions for what Nate is learning, but am responsible to teach it. This is not working for me. So I am looking at our local homeschool/share schooling option for Nate for next year. I am simply overburdened. I am praying that this is finally in God’s timing…but this time I feel good about it. I also plan to pull Ben, because I’m being asked to show progress-progress he hasn’t made. Frankly, potty training is enough progress for me. It also takes up most of our day.  Ben still can’t read, identify letters, or point to numbers. This is ok with me. It may take 10 more years for him to learn these things, and pushing him to satisfy the school districts requirements stresses us both. We need less stress, not more.  I’d rather be on my own, working at Ben’s pace, and send all of my Signing Time videos back. I can still get them from the library, and we’ll live.

Megan I will be keeping in Northport, because she is thriving in the current system.  It’s working for her. I will re-assess when she is ready for high school, and see where we are. It may be different for her, it may not. That is, thankfully, a problem for another day.

Teena

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