I fell asleep early last night and totally forgot to blog. I am so happy today that temperatures have returned to a reasonable high 80's!  Ben is particularly affected by any type of weather change, and he seems to be feeling better today than he has been. Unfortunately, he had three seizures yesterday, and one this morning. It appears he may be coming down with a cold, but it's too early to tell, and who knows if that is really making a difference? Dave and I are under orders to call if we see an increase in seizure activity, but we opted to wait through the weekend to see if this is a trend or simply a reflection of how exhausted he is from the heat and lack of sleep. We tried, but he was so excited about his birthday! It's amazing how much calmer he is. We can see now that the hyperactivity was birthday excitement. That scarcely occurred to us because we've never experienced that with Ben before. The last two days, he takes every opportunity to say "I'm a big boy", so we know he realy gets it.

The long awaited appointment with Abby occured yesterday. She had been here five minutes before she began saying "this is a completely different child!"  it was an amazing visit. She ran through some basic tests with Ben and drew information out of him. I didn't know he could look a pictures and understand what the pics are trying to show, or that he could point different parts out in pictures. She also had him perform some acitivities and she interviewed me.  The summary here was that his speech has progressed to that of a young three year old. This is cool because that is where we think he is developmentally, but also he has made almost two years progress in about 9 months. Yay Ben! She also totally confirmed our decision that public school is no place for Ben right now. Yeah, I knew that, but it's really nice to hear it from a professional you trust.  Abby also suggested that perhaps she could put together a home program for us to work on, and she would only see Ben once a month to make changes a see how he's doing. Since I have little faith that the insurance will pay for more therapy this year, this seems the perfect solution. Abby also thought that Ben would benefit from a Augmentative Communication Device. I'll have to scrounge around and come up with a link to show you, I think I would mess it up if I tried to explain. I will need to check with insurance to see how much of it they will cover.Of course, Ben hardly spoke to Abby when she was here. I was disappointed, but it was to be expected. He hasn't seen her in a long time. Today, he has been a little chatterbox. Oh, one more exciting thing Abby said-she really thought Ben's eye contact had significantly improved. Perhaps not yet typical, but no longer excessively different, either. 

OK, I can't find a link with out more research-there is more than one type of communication device, and I'm not sure which type Abby was thinking of. I will get back to you about that because Nate and Megan are very anxious for me to get off the computer.

Teena

Ben had a great day. He woke up already excited and yelling Happy Birthday! He was so excited all day, he could barely contain himself.  We finally put a video on so he would settle down a little.  In the early afternoon I took him to Country Village to go on a train ride. The rides were closed because of the heat, but opened up just for Ben because it was his birthday. Nate and Megan arrived home a little after three. Ben was very happy to see them. Guests began arriving slightly before five and we were off!  The party guests played in our little pool and smacked the pinata. I think a good time was had by all. Best of all, Ben did not misbehave or take any food, and he opened his presents on his own with only a little help from me. This was his most fun birthday since he turned one(I had just had surgery the day before and was still on painkillers, so maybe that one wasn't as fun as I remember). We had such a great day!

Birthdays are always hard on Dave and I. The year we had Ben, practically everyone we know had a baby, too. We have had plenty of opportunity to see what Ben "should" be doing at every stage. Of course, these same people are Ben's party guests. Usually, Dave and I take a few quiet moments alone and grieve over what might have been. This year was different. First, I think we have made our peace that Ben is who he is, and he's pretty cool. Second, we spent much of this year wondering if Ben would live to see six. And he has! It is a miracle that Ben survived this past year, and a miracle that our family is intact. Instead of grieving, we are rejoicing. God has let us keep him for a little bit longer. He gets stonger every day, and his future is no longer so bleak.  He begins this year so much healthier than last year. Thank you, Jesus, for letting us have Ben this past year. Thank you for a healthier Ben. Thank you that he got to be "real" boy on his birthday.

I will confess to having been weepy all day. We really thought we wouldn't see this day. I was listening to the radio in the car, and this song came on by Stephen Curtiss Chapman, and it seemed so appropriate, so I post it here.

Fingerprints of God

I can see the tears filling Your eyes
And I know where they're coming from
They're coming from a heart that's broken in two
By what you don't see
The person in the mirror
Doesn't look like the magazine
Oh, but when I look at you it's clear to me that...

I can see the fingerprints of God
When I look at you
I can see the fingerprints of God
And I know it's true
You're a masterpiece
That all creation quietly applauds
And you're covered with the fingerprints of God

Never has there been and never again
Will there be another you
Fashioned by God's hand
And perfectly planned
To be just who you are
And what He's been creating
Since the first beat of your heart
Is a living breathing priceless work of art and...

Just look at you
You're a wonder in the making
Oh, and God's not through, no
In fact, He's just getting started and…

Teena

Ben seems to be himself again. This is a source of much comfort to his parents.  The drooling and other odd behaviors are gone for the moment, so we hope they are a thing of the past and we can move on from here.

Today has mostly been spent preparing for Ben's birthday party.  Ben and I took a trip to Redmond Town Center and I discovered two things. Benjamins don't like fountains, and Benjamins do like Sensory Gardens. He wouldn't play in the fountain at all, but loved the sensory, hands on musical garden.  Who knew?

Last night my friend Michele stopped by-she had found a perfect little play kitchen for Ben, for a mere five dollars.  This was the main thing I wanted to get him, and I had given up, so this was extra special. Thanks Michele!

David and Jim are hard at work once again, this time disposing of the 800+square feet of branches we have in our back yard. In the end we have rented a more expensive chipper than we had hoped, and away they go. We are really hoping it will go faster with a larger chipper. It's a great project for a 100 degree day.  Hopefully it will go fast-Dave and I hope to sneak away tonight and see a movie. My neice Marisa is going to babysit. 

Teena

Good news-we didn't end up renting the chipper, but got to borrow one(sorry Heather)

Bad news-40 minutes before our sitter was due to arrive, Ben threw up all of his meds. We can't leave without his meds in him because he has a med level in the AM. bye bye night out. I feel cranky. We think it's probably the heat-Ben responds poorly to all changes in weather

Today was really hot! We were invited to my sister's to play in her new pool. Ben and I had a really nice time.  It was nice and cool in the pool, and My sister did the cooking, which was nice for me. Ben enjoyed playing with his cousin Andrea, which is not a dynamic which happens very often.

I discovered that I really miss the big kids now.  I know they are having a good time, but it seems like a long time until Wednesday now.  Of course, that day will be a little crazy because they will be pulling in about the time Ben's birthday party begins.  We only invited a few kids, but it seems like we will have a lot of adults-Ben has many friends in high places. Actually, this is the first birthday where Ben has been exicted ahead of time, and the first one where he has really had preferences about gifts. David and I are so excited, we are really having to pull back and make sure we don't spoil him rotten. This is so much fun, it has been denied to us up to this point, and we feel that extra blessing.  It will be even more fun when we can share that with Nate and Megan, too.

I *think* there were three myoclonic jerks while Ben was sleeping last night.  Disappointing, but there it is. Ben drooling and general behavior were better today. Dave and I got to thinking that we just raised Ben's acidophilus supplement, and all of the symptoms we have been seeing are consistent with die off. The timing and everything is right, so we are fairly sure that is what we are looking at. We just hope it passes soon. Who knows, some of it may be entirely age appropriate pre-birthday excitement. Wouldn't that be nice?

Teena

We've had a very busy few days. Nate and Megan are safely dropped off with grandparents in Yakima.  By all reports they are having a great time.  I hear they are collecting eggs and harvesting oats...with some movies and games thrown in. Tomorrow they are headed to a friend of Rick and Terry's to swim in their pool. Of course, they are getting in the hot tub every night. Why did I stay home again?

Ben had a GREAT time on the farm. He about went wild over Ricks four tractors. He just ran from one to the other and back again. He was also able to help collect eggs(yep, we let him, Nate broke one, I broke one, Ben broke none, so there you go).  Ben also got a turn in the hot tub, and I think the highlight for him was grandpa putting him on the tractor and taking him for a ride. You could hear him laughing all over the farm once he got over the noise. Then he was yelling "Go, Ben, go!"

Our friends Carrie and Paul came over yesterday-they are visitng from Pennsylvania, and we have not seen them since each other's weddings 15 years ago.  We keep in touch mostly through Facebook.  They are diligent Pray-ers for Ben, and I think really enjoyed the opportunity to meet him. He was charming, as usual, and they got hugs, kisses, and plenty of Ben attention.  I personally was not ready for them to go, but Dave and I are really grateful we made the list of people for them to see while they are here.

We are having some strange struggles with Ben right now. He's regressing in some of his behaviors like drooling, hand chewing, and even biting. Usually we associate this with seizures, but to our knowledge it's been four days, and the behaviors are getting worse. We're also seeing some extreme hyper acitivity. He did start a new supplement this past week, but I don't think it can explain everything. We're going to hold the next two doses of L-carnitine(I think it's calcium on steroids, and we've seen this reaction to calcium before) and call neuro and EC tomorro. We'll see if he improves.This is sort of discouraging, but we were really prepared for setbacks of this kind...after all, it's not seizures. It is, however, frustrating in terms that Dave and I were really wanting to relax with only one kid in the house, but Ben is making up for Nate and Megan's absence. He even woke up before 7 this morning, all bright eyed and bushy tailed, unlike his parents. Anyway, we're hoping this is the result of all the med changes and will gradually get better as he fully recovers from his ordeal. If you're gonna dream, dream BIG!

Teena

Given that I am crazy busy getting ready to go to the farm and get Megan and Nate packed for five days, I'll tell you quickly we think there was maybe one seizure last night, and nobody saw it so we are not sure...Megan just heard that oh so familiar noise.. Since I know you all hang on every detail of what we are doing, and just can't get enough, I am also posting Ben's medication/supplementation schedule for your viewing pleasure.  This is one day. Enjoy!

AM

Breakfast

Lunch

Mid Afternoon

Dinner

PM

 Teena

Today Ben went in for yet another Dilantin level. It was all the way down to 4.5.  An ideal level is between 16-18, so he's pretty low, and this is probably why we have been seeing seizures. However, none today, so Yay!  His Ketones rose to normal levels yesterday, I think that gave him some protection. Or maybe we just missed them. He has been drooling today, I haven't seen that in months. His eye contact was poor today as well. Both of these tend to be symptoms of numerous seizures. On the other hand, he had a great day, even behaved at the mall for two hours while Nate and Megan went to Lego Store and Build a Bear. He also climbed the tree in our backyard-disturbingly high. However, since he seems to need to climb, I'd prefer the tree to the refrigerator, which was his first choice. All this to say, we are going to give Ben a third, small dose of Dilantin in the middle of the day to keep his levels more stable. I am trying to get over the fact that I now have to carry Dilantin with me when we go out during the day. I already have to bring all of his snacks and meals, what's one more thing. Right? Right? Actually, I think this is a good idea, and have thought for two years that this was the answer to Mr. Super Metabolism's medication issues.

A HUGE and wonderful thing happened today-Ben got approved for financial assistance at Childrens'. Praise God! This is such a huge relief for both Dave and I-we had no idea how we would manage without it except for wracking up debt.  Whew, I am still feeling the euphoria.

A funny thing happened on the way to Speech Therapy...If you are a longtime reader, you will remember that our relationship with our beloved speech therapist was marked with Ben being sick one week, and Abby the next. We ended up meeting twice a month because of this. So last Thursday Abby was supposed to come, only Ben was in the ER. I was so embarrassed to call and cancel, but there it was. This morning Abby calls and says "you're never going to believe this" She woke up with the stomach flu, after months being illness free. We have cursed poor Abby once again! We had a good laugh(though Abby's was sort of queasy) and will reschedule for next week.

Tomorrow we head to Yakima in the afternoon. We weren't going to spend the night, but through a series of shcedule changes, now we will. Dave and I are coming back Saturday morning to meet with a good friend we met at the same camp where Dave and I met. We haven't seen Carrie in about 15 years and are really excited about this reunion. She now lives on the East Coast with her family, so this is an unusual opportunity. YAAAAAY!

Teena