Baby steps

So, things have simmered done slightly around here. The massive screaming, hitting, kicking, biting fits have calmed down a little bit and we are able to do normal things like get dressed in the morning. I feel like I'm able to see what sets him off a little better so I'm doing my best to avoid those confrontations. Although, sometimes it's impossible to avoid them when it's something like Hewitt throwing his couscous all over the kitchen table and floor making a huge disaster and my least favorite thing to clean up - pasta. Some things I just have to put my foot down on. But, it seems like the fits aren't lasting as long and with the threat of losing a toy to the garbage can he usually snaps out of it.

I had a very encouraging moment yesterday as we were driving in the car. We drove by an office that we drive by all the time. About 5 months ago I had an appointment at that office and I brought Hewitt in with me. He was doing really bad at the time, dropping, drooling like crazy and really out of it cognitively. Hayden ended up coming in to help me out because I had Titus with me as well. On our way out we ran into someone in the hallway that had a rat and he got to see it and pet it. Yesterday as we drove by Hewitt said "mommy, do you remember that place we went" and he pointed to the building. "remember how I went there with you, and Daddy came, and we saw the rat?" I know this probably sounds really trivial, but it was such an encouragement to me. At the time it happened I wouldn't have thought he was cognitive enough to even remember it at all. And, now, 5 months later he is pulling it out of his memory somewhere. It was amazing and it completely made my whole afternoon. I love how this diet is giving him enough of a break from all the seizures that his mind is able to work again like it's supposed to. He even did a page out of his preschool workbook this week!

It's little steps, but they're in the right direction.

The New Black Cast

Just in time for Halloween, he picked a black cast.

Help

This last week has been a really rough week for Hewitt behaviorally. His seizures are still very minimal, but there has been a big change in him and we aren't sure why. He has made almost everyday this last week SOO difficult. I'm exhausted and at my wits end by naptime and not really sure what to do with him. He seems to lose all sense of what's normal and acceptable...you know the built in filters we all have that help us make decisions about things: it's like they're suddenly gone and he's freaking out about everything and being aggressive toward his brothers, even Titus. It's beyond his normal challenging of authority...it's something different and I hope to get to the bottom of it. He's also been having strange pains in his left arm and leg and we're not sure what's going on there and if it's related to anything. He had a different kind of seizure on Sunday than we've ever seen before and when it was over he couldn't move his left arm for several minutes even though he was awake and aware of what was going on.

Please pray for wisdom for me in dealing with him. I really feel like something else is going on and it's not just him acting out. Thanks.

The Cast

Hewitt got his cast on yesterday and was so excited. He thinks it is so cool and he got to pick out a very nice shade of blue! We also found out yesterday that he actually broke both wrist bones. Ouch! They call it a buckle or a torus fracture, so it's not a complete fracture of the bone. One side just buckles. It should heal quickly. He'll have this cast on for two weeks, then they'll take it off, re x-ray and hopefully put a short one on.

OB/GYN Elephant

This mural was in the wall of Hewitt's room in the ER last night. I can't decide how to describe it...disturbing? creepy? inappropriate? humorous? It's just wierd. Not really sure what they were thinking. It gave us some good laughs while we were there though.

ER=Second Home

Tonight we were at a friend's house and Hewitt was playing on the stairs with one of the kids. We hadn't seen a seizure ALL day. At some point, he either got pushed or had a seizure and tumbled down the bottom couple stairs, doing a flip/somersalt and broke his arm in the process! So, after 20 minutes of crying and being unable to calm him down or distract him we decided to take him in. Sure enough, an x-ray showed he had a break, they splinted it and sent us home. He will get a cast in a few days. About all I can say is, ERGGHHH.

Here he is on the way home, feeling much better.

Amazing!

I am sitting here this morning trying to do some school with Lincoln and Everett and I am completely distracted. Hewitt has been running around the house like a little madman, asking to use the potty, wearing underwear, walking on his tiptoes and sliding around in his p.j.'s. I just called Hayden to tell him and I got all teary about it. It's just so amazing how far he's come in such a short time. I am simply AMAZED and so thankful to have him back.

Catching up

We had our appointment at Bastyr on Monday evening. Things went well, the care was great...but we didn't seem to make much progress or change much about Hewitt's treatment. They did a little bit of craniosacral therapy which was interesting. They recommended some supplements that I could've been doing on my own. They're ones that are talked about in a lot of different naturopath pages. I didn't buy any of them, they were Vitamin E, D and some B vitamins as well. I'm not sure what I was expecting...maybe a little more explanation as to their perspective on why this is all happening. They agreed that the removal of the refined sugar and dairy was a good move and we talked about getting further food intolerance testing done to see if anything else is irritating his system. So, that was the extent of that. I have an email address for the Dr. we were seen by. I think I will email her my concerns, observations and ask if she knows of any studies done. We saw two students initially and she closed things up at the end of the appointment. I asked the students about the research but they didn't have much for me. Maybe the Dr. we saw will!

The American Ideal

In church, we've been learning through the book of Mark. This week we were in Mark 10:35-45. It's this passage where two of the disciples come to Jesus and ask if they can sit as his left and right hand in heaven. I missed the message yesterday because I was in the nursery, but we have small groups Sunday night to talk about the message. As we reviewed the passage and our responses to it, God impressed something new upon my heart. Typically when I read this passage, I think about how arrogant the disciples were to think they would get to sit on Jesus' right and left side. Why would they think such a thing, and then be stupid enough to verbalize it? Reading through the text again, Christ makes a reference to the rulers of their time. He points out that those that rule over the gentiles lord it over them and the high officials exercise authority over them.

As we discussed the passage we all automatically criticized the disciples. But, I couldn't help but think that they were somewhat justified in asking what they did. They gave up a lot to follow Christ. They left their families and jobs. They dedicated their lives to following Him and teaching others about Him. They believed He was God's Son and I'm sure from their perspective they thought they were pretty fortunate to be a part of this "inner circle" with God's Son. In their time I think this would've been the natural progression for someone in their position. They loved Christ and wanted to be by His side. The next thing that God laid upon my heart here was this...they expected something like this because of what they were used to seeing. I can't help but think about us, in America. We have this American ideal that our lives are measured by. When part of our lives doesn't line up with the American ideal we feel like something is off. The funny thing is that for the majority of the world there is no "American ideal," there is survival, and so many of the things we (Americans) care and worry about would fall away if our basic needs weren't being met (including the luxury of safety). Two of the areas I was really convicted in were: Hewitt (the obvious one) Having a sick child does not line up with the American ideal. Homeschooling was the other one. I have so many great memories from childhood that stem from traditions or "normal" American things to do. This was one of them. At the beginning of the school year I was really struggling with not sending my kids off and letting them have that experience of going to school. I have had to remind myself that God laid this on my heart for a reason. That homeschooling fits our lives and our children better this year, and that's okay.

I could probably think of a hundred things in my life that I measure by the "American ideal" and not by the Bible or the fact that God created me as an individual person and an individual path apart from the expectations my culture puts on me. I love that Jesus doesn't rebuke the disciples in this passage when they ask. He points out to them that they are going to be different kinds of leaders. That they are going to be counter cultural. He says, "whoever wants to be great among you must be your servant, and whoever wants to be first must be slave of all. For even the Son of Man did not come to be served, but to serve, and to give His life as a ransom for many." This is so beautiful. Christ was so radical in His time. The secret rebel in me loves these passages that point out how radical He was. He was telling the disciples to go against their culture and serve people, not to put themselves first. I think today this is still counter cultural. I guess I will be asking myself this week, by what will I measure my life and my experiences by? It's funny, it actually seems easier to not measure it by the American ideal right now because there are a lot of things in my life that don't measure up!

Sorry Sarah

We had a leadership retreat for church over the weekend so we had to leave the kids with other people, yet again!! So, this time we split them up, and Hewitt and Titus stayed with friends of ours that also have 3 & 1 year old boys. Lincoln and Everett came with us to camp and stayed at the Mallory's. It was nice to have someone along. After dropping Hewitt and Titus off, I went home, packed the other two and us up and left to head out to Camp Gilead, where the retreat was. Just before leaving town, we got a phone call from my friend. It hadn't even been 5 hours yet and Hewitt had already injured himself. Ergghh. He had been having such a great week so I wasn't making him wear his helmet. He had a random drop that afternoon and cut his head on a toy! He had to go to the er for stitches - but ended up getting glued! I felt so bad all over the place. I felt bad for him that we weren't there to comfort him, I felt bad for our friends for having to deal with an ER trip on a Thursday night, and of course I felt bad for myself because I don't like to let other people do things for me. :-) Everything was fine, he did great! He has this great purple glue on the cut and everything is fine. And, some wise woman told me that I need to let people do these things for us because it's good for other people to be able to serve and bless us this way. I had to agree. It was such a blessing for them to take the boys when they have 2 of the same ages at home! I don't envy having 4 kids 3 and under! We were definitely thankful of their willingness to have Hewitt and Titus for the weekend. Praise God for good friends!