Ben had a pretty good night-still eye blinking but less frequent and less severe-I'm still thinking it's a good sign. He had a really good day, happy, tons and tons of words, less hyper, less food stealing. It all may come up again, but this is a happy trend for now. We are going to try and hit Point Defiance Zoo tomorrow, and then our friends Jim and Heather are coming here to ring in the New Year with us.  I think it will be really busy so..

Happy New Year!

As always-we'd never have made it this far without your emotional(and as of late, fiscal) support. Thanks for praying for us, we feel it all the time.

There was lots of eye blinking last night, but only one largish seizure. We are taking this to be an improvement and hoping (HAH) the worst is over.

Unfortunately, Ben is back to crazy hyper, stealing food, and general cussedness. He cried most of the morning and was in trouble most of the afternoon. Poor little guy is really searching for a fix, and there is very little we can do for him. I’m working fairly hard at only providing meals and snacks that are his favorites during this time, so he can fell satisfied about SOMETHING. It’s not like he actually gets nutrition from his meals any way. (ok, as I’m typing, it was quiet-you parents know the kind of quiet I mean. Upon inspection, Ben had dumped an entire $10.00 bottle of dried  oregano on my freshly swept and washed floor. *huge, frustrated sigh* time to eat my words…)  In a fit of Pique this morning, I called a family meeting and told everyone to PLEASE stop asking me why Ben is acting this way. He is weaning off an addictive drug and is miserable with headaches and cravings. Could we all please quit complaining and have a little compassion on the poor kid?  This will last at least two weeks, and no matter how many times someone asks me, that is still going to be the answer! (all right, my compassion has rather morphed into irritation, but I will drum some up and then put Ben to bed. ;)

We did have some lovely distractions today. My friend Julie from Yakima dropped in for lunch. Shortly after that, my friend Heather and her kids came over, and Heather brought coffee and cranberry bliss bars!  We had a fine afternoon supervising playdough, and Ben was nicely distracted.

I got a long call from a social worker at Seattle Children’s who is helping me get Ben some disability benefits, some respite care, and hook up with some other families who live with sever epilepsy. She also told me how to lodge a complaint about the whole giving my kid too much Dilantin and making him vomit blood incident.  She didn’t quite say it seems fishy that no one has talked to me since I lodged a complaint the first time.  I’m going to make sure we’re heard….he could have died. That’s not acceptable.

On that happy note I’m signing off-dinner’s ready

Teena

Dave and I are trying to hold the next few weeks with an open hand.  Ben had a pretty rough night last night as far as seizures go. They were all short, but tons of eye blinking and then tonics(full body convulsive) this morning.  Still all happening while he’s sleeping, but not pleasant. He is tired today and his balance is a little off. His speech has improved as the day goes on which makes me feel better. 

Friday was the last day of Dilantin. It takes at least two weeks to process Dilantin of your system. After two weeks we will begin to really evaluate how he does without it.  This is the most dangerous and stressful part of the whole endeavor.   We ask you to pray specifically that Ben will not end up in the hospital, and that he can get through this without a status seizure.  Dave and I also ask that you pray for a spirit of calm in all of us-the re-emergence of this number of seizures is hard on all of us, even when we know it’s a part of the process. The rule of thumb is-whatever you started taking a brain –altering drug for will re-emerge as you come off the drug. This is usually only temporary.

The dietary changes have brought Ben back down to ketones of 80 in the morning and 160 at night.  This should be good news-I’m wondering if this change may play a part in the seizures we are seeing, but there is no way to know at present. Maybe Children’s will call today! Maybe not.

Teena

Ben had an *ok* night. He had some eye blinking, but is was short, and then two possible seizures this morning, but we weren’t sure.  He was pretty tired today, and took a nap in the early morning. I’m not quite sure what that was about.

We went ahead and made his dietary changes today.  It meant work for me instead of just laying around as I wanted to, but it got taken care of. At least I am only changing meals, and not snacks as well.

There is some question about whether Ben has yet another ear infection, and whether we should put him on antibiotics this time. We were supposed to start today.  Instead we are back to ear drops four times a day in the hopes of getting rid of it this time. We also dropped the Dilantin tonight(very scary, Please pray. pit in stomach).  We didn’t feel we could make three changes on the same day and have any idea what might be causing seizures over the next little while. I tried to get hold Dr. Mark for his advice, but strangely he’s not available. Perhaps it’s the holidays?

Teena

The biggest gift we got today was a seizure free night last night, and a seizure free day. We have only God to thank for his infinite blessings.  We never cease to be surprised by his generosity. 

We had a lovely day. Less in the way of material things, but since the almost teenager told me it was the best Christmas presents and stocking stuffers ever, I guess we did ok.

Dave and I were up late last night wrapping gifts, putting toys together, and making the goodies for stocking stuffers. We are both feeling the pain today, but we’ll try to get to bed early tonight.

The kids were predictably up early(they’re all early risers except me, and I rarely sleep past 8:30).  My dad arrived alone at 7:30, and after we arm wrestled Ben into meds and a snack, our day was under way.

Ben was pretty hyper, and a little obnoxious.  He was driving Dave a bit crazy, but I reminded him that Ben is different, and yet totally normal at the same time. it was, after all, Christmas, and he is six years old! He finally settled the second half of the day and we were able to sit around the dinner table and relax-very nice.

We have a couple of Ben highlights-One being that he was thrilled with my dad. Ben is my dad’s boy all the way. He talks about him all the time and always sits with him when he’s here. Ben’s love was a little excessive today…But eventually Ben got tired of sitting and said “come on Grandpa, I want a ride” which my dad understood with out me translating.  Pretty cool that Ben used his words, and somebody understood him!

We also sent the kids outside for a bit so the grown ups could play Wii-and my dad beat us all over the place.

My dad took some time in the late afternoon to give Nate and Megan some guitar lessons.

We missed my mom, but she just wasn’t sure she wanted to give us the special gift of seasonal flu, so she stayed home. We sent her presents home and I put together a dinner and some pie, so she’ll be feeling better soon. (Love you Mom, get well!)

Teena

Well, last night went even worse than we imagined. Ben had almost non-stop seizures, and Dave and I got very little sleep. We kept waking Ben to be sure he wasn't in status.   It did seem that the seizrues were less frequent if we kept the oxygen right by his face, so we also lay awake and held it on his face.  He still won't wear the mask...

Despite his horrible night, Ben is having a great day so far.  He is happy, chatty, and busy. It is always a relief to see him do so well after such a night.  We are hoping not to see a return of intense seizure activity tonight.  It could really go either way.

I am waiting upon a call from Children's, as usual. Because of the intensity of last night, we may put off the end to the Dilantin wean once again.  The last day of Dilantin coincides with the first day of the new diet, so we may have to adjust. Since it's already 4:00 on Christmas Eve, I begin to have my doubts that that call will come.  I'm not sure what we'll decide to do, I guess we'll see how tonight goes.

My mother called this morning to tell me she has decided not to come tomorrow unless she makes a miraculous recovery. My Dad is still going to come and spend the day with us, and he will take her home some yummy treats and her gifts.  A bummer all the way around, but I am selfishly glad my dad is still going to come.(sorry Mom, love you, promise to miss you!)

I'm not sure what will happen with the blog over the next couple of days...you all will be busy, too, so I suppose you can make it a day or two without your Welch fix.  I'll post if anything major comes up.

May God bless you in the coming year!

Teena

We have had a spot of good news-Dave has had billable work the last two days.  It also looks like several new projects are in the offing, and work *should* pick up after the New Year.  In the meantime, every bit helps!

Ben and I spent the entire afternoon at Children’s. It seems they are going to re-invent the Ketogenic Diet for Ben, whose balancing point is finer than most.  This will probably make no sense to you, but they are lowering his ratio(more food) and adding MCT oil to every meal. Lowering his ratio will also lower his Ketones which will keep him from Hyper ketosis all the time.  However, that will raise the possibility of seizures.  Adding the MCT oil will keep Ketones up, but hopefully slightly lower than they are now.  This is a two week trial. In the meantime, they want to closely monitor Ben, which means he gets to go back next Friday for labs. They are fasting labs, and I really don’t want to go in before breakfast on New Years Day, so I’m considering calling and seeing if he can go on Saturday instead.

We went to a nearby beach and watched the Christmas Ships parade go by and enjoyed the bonfire. It was a lovely evening, right up until we started to leave and Ben had a seizure. It was tiny, noticed only by us, but disturbing because it was his first day time seizure in quite some time.  It was followed by a second two hours later, and so far two while he’s been sleeping. We are waiting for evening meds to kick in, and if this continues we plan to go ahead and give an extra dose of Clorazepate. This is pretty upsetting, and we are trying very hard to be philosophical-we knew this was coming, it’s just so stinking hard to watch!  We also would prefer the collapse to happen after Christmas-he was so miserable with seizures every 15 minutes last year. I’m trying to hang on to the fact that he is infinitely better this year than last, and that is something to thank God for.  Seizure free days weren’t a part of our vocabulary for a long, long time.

My parents always come to my house on Christmas. However, my mom called today and she is pretty sick. It sounds like she has had the flu, but is it swine flu?  If it were, we’d be fine with her coming over. However, we really don’t need three weeks of flu again this year, especially if Dave is going to have work, and especially at the end of this wean.  We’ll really miss ‘em if they don’t come, though, so we feel torn. We all decided to see how she’s doing tomorrow and discuss it then. Hey, miracles can happen!

Teena