Ben slept well last night, and thankfully seizure free.  He woke around 5 AM, which seems to be his pattern as he's coming off the Dilantin. We are hoping this is not not a long term pattern as neither Dave nor I much care to get up that early.  He had a great day, tons of words, great interactions, increased play skills, and generally being tuned in to what is going on around him. We continue to be delighted with his emerging play skills. He's using characters to ride motorcyles and in cars. He's making engine noises for all his little cars. The biggest thing is he really wants to be where the other kids are, even if he's not quite ready to play with them. He will play near them with the same materials, and once again we have a develpmental stage of social skills. YAAAAAY! (I seriously just heard Kermit the Frog in my head. Oh, and I just dated myself)

We've had a great day. Church this morning.(Megan's play is in two weeks! Mark your calendars, Grandparents!)  Afterwards Dave and I took our solitary ramble (so refeshing!). Later, our good friends Jim and Hather came over with their kids and we made a dent in the leftover pie.  It was a great end to a peaceful long weekend. I wish we had another, but I supposed I ought to be satisfied with the gifts I am given.

Teena

Despite my concerns, last night was seizure free-Yaaaaay! Ben slept really well, and really late.  He's had a pretty whiny day, and has been very tired, but has not been excessively sleeping which is good.  He's definitely having withdrawl symptoms, poor little guy. 2 more weeks to go!

My parents came over for brunch this morning.  We added leftover turkey to the usual brunch fare, and it was all very good. Hey, you can never go wrong with a blueberry-orange smoothie!

This afternoon Megan went to her cousin Grace's house to play, and my nephew Sam came here.  Sam taught Nate to play "Smoke on the Water" on the electric guitar. Fortunately, I was shopping. :)  Ben was great, he hung out in the bedroom with the boys and played Legos. He also took the opportunity to gaze adoringly at Sam. Ben apparently really admires red headed males over 6 feet tall-he loves my other redheaded nephew as well. (well, there's one more, but he's not yet over 6 ft).  The girls apparently had a Build-a-Bear campout.

We all met at Third Place Books later for the new Star Wars Lego Encycopedia launch party.  It was pretty fun-there was a costume contest and people dressed up as Clones. Ben was terrifed of the costumes and kept signing "scared" every time he saw one.  After a bit of that he was done and wanted to go home. Eventually he signed thirsty so we went and got him a drink of water.  I was so pleased to see him using his signs outside of his normal comfort zone. Fear of masks is a new developmental stage-yaaaaay! Dave and I have been so, so happy to see the changes with the Dilantin wean.  It's like having a whole new Ben.   

We were planning to have some new friends over tomorrow for dessert, but one of their kids got sick. She has a fever, and we had to say no. Have I mentioned that my goal is to make it 4 weeks with no doctor or hospital visits?  Anyway, this is the 5th time either they or us have had to cancel.  Makes me wonder if we'll ever get this friendship off the ground.  They have been very patient and understanding, though, so we keep trying. Now what we do tomorrow?

Teena

We have had a nice quiet day. Dave did get up at the crack of dawn to go shopping.  It's really not my thing. however, he got a few things for the kids for Christmas, and apparently finished birthday shopping for me. (we call November through January the birthday season at our house).

We dropped another 50 mg of Dilantin today. I'm feeling pretty nervous because every night this week Ben has had one major seizure. This could totally be withdrawl, but it could also be a sign that the Dilantin was actually preventing some seizures. It's really hard to know...so we're moving on and praying, and praying, and praying for the best result.  If the seizures get really bad we will have to go back up. Dave and I can hardly bear the thought.  Ben is so much more in the moment without the Dilantin.

Dave and I are enjoying a new luxury. With Nate and Meg getting so mature, and Ben being more stable than he has been for a while, we are indulging in walks....alone! Yes, just the two of us. We actually have adult conversation interruption free.  Once a day on weekends for half an hour or so we get to be alone-more or less. It is a really nice time for us, and we both find it relaxing. We have our phones with us should an emergency occur, fear not.

It was so peaceful here today, I even squeezed in a nap. Will wonders never cease?

Teena

It's been an amazing day.  First-Ben's meds stayed down last night on the first try, Praise God!  He made a full recovery after drinking some apple juice.  This morning someone who shall remain nameless donated a significant amount of money to Ben's Care Fund in the name of the Lord. Dave and I are a little speechless, and very humbled that God chose to bless us in this way. Why, oh why do we ever doubt?  However, it gave us a great deal to be thankful about today. Thank you, Lord Jesus.

We were also incredibly blessed today in another way. I am sure that it comes through how much I love my extended family.  We are all different in some ways, but my family are all good people, and people I actually enjoy spending time with. I particularly love being an aunt-my nieces and nephews are a delight to me. (ooh, I got the baby to kiss me!)  But I think what is really special to me, is how much my family loves Ben. For some reason I was worried this time that the other kids might ignore him or find is odd behaviors irritating. I did pray about it, and God heard me. Everyone was so kind, so sweet. I think Ben sat in every adult's lap, and half the kids.  He played and played, and everyone helped us keep an eye on him so that at times, both Dave and I were sitting down, together, and enoying family time. Did I mention TOGETHER?  The really, really amazing part was, Ben did so well, I finally brought him home at 8:00 simply because it was time for meds. We hadn't brought them with us because it never occurred to us that he would make it that long. This was the absolute best holiday we have had in a long time.  David and I rarely get to share these events together because one of us is always on Ben duty. But today, with a loving family to fill in the gaps, it was even, dare I say it? Restful. What a miracle for us! Maxsons, I love you all!

The day was not without it's pitfalls, however.  Ben got one candy with red #40 in it. I managed to get the candy out of his mouth(thank for the catch, Deena) but not before Ben had got some of the color sucked off. A few hours later he tried again, with another candy, and the same result.  Finally, he pulled a pecan off of a pie (thanks for risking fingers, Kathryn).  Red #40, bad. Reflexes of my family, good.  I'm mildly concerned about the impact on seizures with exposure to Red #40. However, too late. We will just have to give him Clorazepate if things get bad.  If I were to look on the positive side of things, I would say "Well, at least we didn't have to worry about his Ketones getting too high" because of the small amount of sugar he got.  Which reminds me, he did almost throw up on my poor niece Shannon. He had been spinning in this chair, and leaned over the side of the couch, I think to kiss her, and...but disaster was averted. All was well.

Tory, Michelle, Ashley, KJ, Bailey-we missed you! Jenny, we missed you, too!

Teena

Before I get to the exciting stuff, we had a nice day. We made all kinds of goodies to take to my mom's tomorrow. Nate and Megan helped a lot, and it amazes me how much faster it all goes with two capable helpers in the kitchen.  Ben helped stir everything. Even the clean up was a snap with me doing dishes, Nate sweeping, and Megan wiping down counters. Yes, when we were done the entire kitchen had to be cleaned.

Our excitement came in when Nate said "Mom! Help!' the first time today. Ben had been playing with an old watch of mine for the last several days. Now, when Ben is weaning a med, he gets this insatiable need to chew. He simply can't be stopped, so we try to find appropriate things for him to chew. I figured my leather watch band was chewable. However, Ben chewed the face instead, and broke the glass cover. We could hear glass gritting in his teeth. I thoroughly cleaned his mouth while Dave and Nate searched out the glass(might be some sort of heavy duty plastic) pieces and put the face back together so we could see how much he swallowed. I'm thinking the   ER at this point. However, we found all the pieces, so whatever he was gritting must have been tiny. Sheesh.

This evening I had just stripped down to get my PJs on when once again, Nate shouted "Mom! Help!" for the second time.  I threw my bathrobe on and ran out to the living room where Ben was vomiting copiously all over Nate and the couch.  *deep sigh*  We had just been preparing to give him his evening dose of meds...which will now have to wait an hour or more. I quickly got Ketones and they were pretty high, so I gave him some apple juice which miraculously stayed down.  I know it can't be Dilantin because his last level was 5. That ridiculouly low. I don't think it can be flu, because we haven't been anywhere.  So it remains to be seen. In the meantime, both boys got a shower, Dave and I dismantled the couch and started the neccessary laundry, and now we are on Ben watch. He's sleeping on a mattress in the living room. I've no idea why we ever bother to put the mattress away.

Happy Thanksgiving!

Teena

ok, it's not so much a quiet moment as it is that I am trying to avoid going in and making several meals and some pumpkin muffins for Ben.  I've already made four meals for him today, and it seems like the kitchen is full of dishes and the garage full of laundry. Aaaahhh, the holidays! I did figure out a turkey meal for Ben that I think he's really going to like. I just haven't come up with a good dessert yet.  I"m trying to decide if I should make something new and exciting, or stick with what I know he likes. I'm leaning heavily towards sticking with what I know he likes.

Ben had a great night last night, seizure free, so far as we know.  As a result, Dave and I slept like logs and woke with better outlooks than we have had for some time. This whole Dilantin experience has kept us so off balance, it was literally driving us both crazy. I've been doing some reading, and it seems that the worst of the seizures tend to come once you are totally off the drug, so we'd appreicate continued prayers. Ben is scheduled for another drop on Friday, and there's only one more after that, then he's DONE! it will be cause for rejoicing indeed.

We've been noticing that it is much easier to get Ben to eat and drink now. He's not fighting much, and is willing to feed himself. It really makes me wonder if he's been nauseous the entire time he's been on Dilantin.  Poor kid, I wish he had better words to tell me what is going on. I have yet to learn the word "naseosu" on Signing Time. However, I did learn "sick", and have been using it, and Ben is finally starting to understand what it means. Maybe it will get easier.

All right, all right. I gotta go make muffins and Turkey with turnips. And figure out a dessert. I'm thinking chocolate ice cream...

Teena

Things are coming along. Ben did not have a great night. He had one largish seizure and 3-4 short jerks. This is two nights in a row, which we are mildly concerned about, but seizures happen when you wean meds. We plan to hang in there a while longer because the positive changes in Ben are wonderful, and we really want him off this med. Keep on praying, keep on praying just keep praying. What do you do? you pray, pray, pray.

The positive changes are wonderful. Mostly we are seeing Ben make better eye contact than we have seen in a long time, and he’s using more words than we knew he had. He’s also making observations about what is going on around him. It’s funny, I hadn’t realized this stuff had disappeared, but now that it’s back I am so very, very happy to see it again. (yep, still hating the meds. *sigh*)  We’re also seeing a big increase in his self-narration when he plays. OH, it’s imaginative play, too.  Check another thing off the list of things they told us he’d never do.

We’re still not having much luck with the oxygen. We keep on trying, and I try to get a few minutes each day to let him practice getting used to it. 

Megan got a Build-a-bear gift certificate for her birthday, so we headed to the mall today to get her a new bear. Of course, if we go to Bell Square we will also stop by the Lego store. Come to think of it, the ONLY reason we go to the mall is to go to Build-a-bear and The Lego store. I guess we’re not mall people. Anyway, Megan has a new friend, and Nate used his own money to buy a new DS game. Turns out there’s a Game Stop at the mall, too. He’s very much looking forward to having it at the family Thanksgiving.

Speaking of Thanksgiving, we are all really looking forward to it. However, Dave is feeling kinda sad because he will have to leave early with Ben. Ben does better every time, but this time he is in the middle of a med wean, and so is totally unpredictable. I plan to ask my family to help keep tabs on Ben so we will always know where he is. I know the other kids will help police him if they know what to look out for. And if Ben doesn’t have a parent hanging on him every second, he might settle down for longer. Well, I can pray can’t I?  I’d like to have Dave there for the whole thing for once. It’s been four years…

We continue to try to take it easy, or at Jane Austen would say, "’rest our nerves”.  It’s fairly peaceful, and we like that.

Teena