Ok, Dave is working late most nights, I've got a ridiculous amount of doctor apts, friends are coming tomorrow, Dave's parents are coming over the weekend, My dad's birthday is Monday,it's time to order homeschool curriculum, and I'm hosting my sister-in-laws shower on Tuesday.  But things are good. We are very busy, but Ben is sleeping well, having fewer seizures, and in general his behavior is calmer, more settled. It helps so much when Ben is having good days. I got a great deal accomplished today, so I can relax and enjoy all these events.  I am even almost ready for the shower..but you know how that is. Somehow the day of an event like that the house is always a mess....ah well, I'll get up early. I got to pick fun baby stuff today-It's so much fun! And I confess, the shower is mostly going to be Costco catered. Hey, a woman can only do so much!  My Dad is getting a hand made gift!

I was so productive today, I'm exhausted, so I'm off. Thanks for sharing my happiness

Teena 

I just remembered-Dave took Ben to OT this morning. He met Adrienne but opted to sit it out. Adrienne said it went really well, and her current focus is to get ben to stay with a taks 5 minutes or more.  He was cheerful from the word go today, and I think very cooperative.  

ah, Ben story. Last night  at 7:40, Ben says "go night-night" So Dave takes him back to our room, Ben crawls into bed and GOES TO SLEEP.  We've come a long way from 2-4 hours to get him to sleep. Tonight he fell asleep in my arms. I must confess, Dave and I enjoy our restful evenings. I was so upset to lose naps when Ben started having seizures, but the trade off has been really good!

The best part of the day was a gift from God-no seizures! This is certainly a better pattern than we had been seeing!  He did have one this morning,but is very cheerful today and seems to be suffering no ill effects.

Yesterday was Ben's 5th birthday. Birthdays are really hard on Dave and I. We love to celebrate Ben, but as each year passes and the differences between Ben and his peers becomes more pronounced, it tugs at our hearts.  So we indulged in a bit of grief, and turned our attention to celebrating who he IS. 

Ben chose a soccerball party, so we decorated accordingly, balloons and all.  I spent the night before preparing all the food. I decided that EVERYONE would eat food that was ok for Ben. Here's the menu, because I know you are wondering: turkey cilantro meatballs, bacon, pork rinds, pina colada banana chips, gingerale, applesauce. Amazingly, this went over well with Ben's two guests-cousins of the same age.  Later they had pecan muffins and coconut/banana icecream.  The other kids didn't like the muffins, but they ate the icing, which I figured was pretty typical of the age group.  They played hide-n-go seek, and pin the tail on the donkey. Ben was able to play with some assistance. Nate and Megan did a great job of running the games and keeping the little ones occupied. After presents, which Ben opened without much assistance( a first for him) they all went outside and played in our pool. Yes, they were freezing, it rained most of the day yesterday. But they are young and resilient, and we have a cool pool with a slide. All in all it was a big success.

My mother informs me that this manner of party was her idea. Perhaps. But I do have to thank her-she picked up the the other kids and took them home, assisted with the party, and managed to finish my laundry. Definitley above and beyond the call of duty. While I'm at it, let me mention that she comes every week to help me catch up on housework, and when school is in session I do projects with the big kids while she tends to Ben.  Thanks mom-I couldn't do it with out you!

We had a good day-Ben could barely sleep at the end, he dozed off singing "Happy birthday to you" and is delighted with every present he got. This was the first time Ben played with all his presents on his birthday, the first time the rest of the day was quiet because he was so happily occupied.  Slowly, slowly, painfully slowly this is getting easier-some day we might even feel restful! 

Teena 

Ben has had a great, cheerful, and calm day  (except the part where he took his balloon outside and let it go on purpose. I was annoyed, he thought it was exciting. grr) 

Ben went three days without seizures, but had some Saturday night and last night. We started the epilepsy drops today. So far he is tolerating them well, we'll see if they help.

He did great at my brother's birthday party, but was exceptionally active that day. My parents gave Dave andI a gift by taking Ben for 20-30 minutes and letting us just visit-the two of us, together! It was like a Christmas miracle! Thanks Mom and Dad!

tomorrow is his birthday, I am spending today putting together all his favorite treats. Banana coconut ice cream sounds pretty good, I think! 

Please remember me in your prayers-I am dealing with severe anemia again despite extreme measures. I meet with my doc this week to discuss what's left of my options. I am not happy.  But it's time to take care of myself, I guess. 

I'm off to start some more veggies fermenting.

Teena 

I can scarcely remember what I need to record here.  No seizure activity that we are aware of last night. We did end up raising his Topamax again.  He didn't respond to that so well last time, so the next few days  promise to be difficult.  Dr. Klein called. He wants Ben to take a supplement called epilepsy drops. Hes sending it to us. He thinks Ben still has a lot of swelling around those bones and it's been there so long it needs a little help to move along. When the drops get here we plan to have Dr. Mark check them out.  I havne't heard from dr. mark yet aobut the recent test results-usually he calls or emails them to me. I sent him and email this morning to see if he'll send them. If Ben has parasites, the whole family will have to be treated...People with leaky gut frequently have parasites because their digestive system can't kill those nasty bugs the way a healthy system will. Let's face it guys, we eat a lot of bugs...of every kind.

I'm sorry if my paragraphs and typos are bad today, I seem to have strained or sprained my right wrist and it's really giving me trouble. 

We got to see our  friends from China yesterday, it was delightful!  A little hard because there were three of us, Sue(from China) Beverly, and I. Back When Ben was a baby and I didn't worry all the time, the three of us had a homeschool co-op together.  It was a reminder of a more peaceful time. Sue didn't know anything about what had been going on with us, so we had to go through it. That is still hard for me, unto the point of tears, every time.  However, we got past that and I really enjoyed hearing about China and how they are doing, what they are doing. Hopefully we'll get to see them one more time before they go. Sue's daughter Elizabeth holds a special place in Megan's heart, and they didn't get to see each other yesterday.  Ben, by the way, was really quite good. We met at Lake Sammamish State park, and most of the time he played in the water with the big kids, or in the sand by my feet. I actually got to visit while being outside. Believe me, this amounts to a miracle. God's hand had to be in that one!

I'm sure there's more, but my arm hurts and we have two crazy days ahead of us. I may not blog for a bit, there is so much going on.  

here's to another seizure free night!

Teena 

I just heard from Dr. Mark-NO parasites! PHEW! he does have a yeast issue and an imbalance of bacteria, which is what all the fermented veggies and kefir and Nystatin are about, so we're on the right track 

I was totally worn out last night, and I may have to put everything in here in installments to get it done. Bear with me if it's disjointed.

 Yesterday morning Ben had one seizure, which is better than the weekend. Abby came at 9, but Ben would not co-operate with her at all. He seemed unusually tired, and would snuggle with Abby in his blanket, but wouldn't play with her or even take a snack we knew he wanted from her. In the end Abby took him out to her car and let him play with all the stuff. We've decided it's time for Ben to go see her at her office. Then I can get out of the way, and he will not be so comfortable-the very reasons we were doing it here!  There is also a group starting late August early September where he could practice his speech skills with other children, and work on conversation and peer social skills at the same time. This seems like a good choice for Ben right now. It's in Seattle, and I have no idea what the drive will be like, but I guess we'll jump off those bridges when we come to them.

After Abby left, my mom came. I got some errands and chores done, and away Ben and I went to get his eyes dialated. Getting the eyedrops in went surprisingly well. Then we had a 45 minute wait, so Ben and I went to nearby Walmart. ( let me insert here-My brothers' 40th Birthday party is this weekend-yesterdy was the actual day and though I remembered, I forgot to send him a card (sorry Jod) but I am relentlessly looking for a certain gift. His wife is pregnant with their 6th child, and I am planning a baby shower for her because, after all, by the 6th kid you deserve to have everything new! In the meantime, I am preparing for Ben's 5th birthday party with 2 guests, but he wants decorations and of course all the food will have to be hand made, even the ice cream. Somehow all of these events snuck up on me, so it's a mad scramble to make them all come together-therefore, Walmart it is!) I got nothing of import accomplished at Walmart, and we scooted back to the doctor.  It looks like Ben's eyes' are healthy, but he is farsighted. He won't need therapy, but he will need glasses. That is on the agenda for this week too.

Once we got home I ran more errands to accomplish what didn't happen at Walmart, then home for dinner(crockpot, I was thinking ahead). That night I went to a book signing by JA Jance with my mom. That was pretty fun.

Whew, it makes me tired all over again to think of yesterday. Today I am mostly home catching up on cooking and chores around the house. Still very busy, but at least we're not living in the car.

Ben had one seizure this morning, then he slept for a long time and woke very cheerful. I have a call in to DR.V to see if we need to change meds again.

I finally got a batch of coconut kefir finished, and Ben likes the taste. Now I need to start a new batch of Sauer Kraut. I also added the Liver Life back in since taking it out has made no difference, and I will take his ammonia levels in the morning. I may do the fructose breath test with him tomorrow. This one is for allergies, mostly give more accurate information on what we already know. As I was typing I got an e-mail from Dr. Mark saying he has new test results and he'll review them by this evening. These are the parasite tests, and I confess to being nervous! It's yeast, too, but I already know that, so not as scary. Or gross. I swear, some of the things a mother is called upon to do...

Teena 

Ben actually had a better day today-only one seizure, though he did have two of those questionable "episodes". However, he was responsive during both of those, which means either it's the beginning of a seizure that is stopped by meds, or something else entirely. Either way, we're happy.  He also seems to have adjusted to his meds, and was his usual, energetic cheerful self today. We finally got our pool filled up, and he was delighted! There's nothing better for a sensory kid than a giant pool of water. Nate and Megan spent most of the day in it as well, and we worked with Ben on learning to "join the game' so he can play with them, not near them. The lesson went really well, now that I have identified one of the problems. I hope to use them to work on this more in the future.   His foot is healing nicely, though it is going to leave a scar. Tomorrow Abby(speech therapist) is coming in the morning, and he has the eye DR. in the afternoon where he has his eyes dialated. That's not going to be fun, so please pray with us that Ben will handle the process well. (I know I hate it)

David's sister and brother and their families came over yesterday and brought pizza. We had a great visit, and Ben worked on playing with his cousins and was much more successful. They are reserved children, and Ben's full body tackle-hugs were a bit much. He mellowed the second day, and they were ready to play with him. Yaaay! successful peer interaction!  The first thing he said when he woke this morning was "Where's Emma?" and when I told him she went home, he cried. So sweet, so age appropriate. Yaaay! 

I promised the kids we would stay home today and do nothing-and I made them stick to it. So we had a wonderful restful day, and for the first time it felt like summer. Remember the lazy days of summer?  We've been wearing ourselves out! This whole week is pretty quiet with the exception of tomorrow. Some  friends of ours are home from China for the first time in three years, so we are hoping, and praying to see them. What a joy to see old friends!

Teena 

The good news is Ben is sleeping through the night again. The bad news is he is having seizures in the morning when he wakes up. Yesterday he had two, one of which we weren't sure what we were seeing.  He had another of the same type today, and then he fell asleep so we were sure. So he's branching out into another kind.  We so, so want to get some control here. The neuro wants to raise his meds more, and Ben has had a pretty tough time adjusting to this dose, though yesterday was better, finally.  We're really not sure where to go from here-AGAIN.  Ben loses skills on the higher doses of meds.  This would make OT and Speech really difficult again. I just made arrangements with Abby to come this week because things were at least stable.

May I rant? I really, really want to get away from all this for a few days, and go be a "normal' family on vacation and not have to worry about all this, and how close a hospital is, and do we have enough meds to get through it.  But we need some stability before that feels safe.  Just a little stability-we're not asking much! End rant here

We had a nice visit with David's family yesterday. All of the kids were excited to see their cousins. Ben was especially excited to see Tyler (also know as Ty-Ty) and Ben kept chanting his name. He really, really tried to play with them. He certainly wanted to be where the kids were, but he just coulnd't enter into their games and then he would get frustrated.  Poor Ben. This was pretty hard for Dave and I to see. Ben just can't communicate fast enough to keep up with other kids. On the other hand, we were really glad he tried, and some interactions were successful, unlike the past. Really things are getting better, we just keep on raising that bar.

Teena 

Ben ended up having 3 seizures today