Thank you

Yesterday, I had the biggest weight lifted off of my shoulders. Let me explain.

The end of last week Hewitt continued to regress in his seizure activity. We were/are back to hours on the couch sitting, drooling, staring off and barely talking. I was in a panic because I no longer feel like I can trust the Dr. we had our care with and wasn't sure who to call. I emailed our pediatrician, who has been a huge support through all of this, and asked her for some ideas, options, anything. She started calling trying to get us into Swedish to the Dr. we were supposed to see to begin with. We didn't get in before the weekend, but yesterday we got a call at 2:00 saying the had a cancellation and could we come at 3:30?! We said, yes, closed down the shop and took him in. I hate going to appointments rushed and unprepared, but getting this appointment was an act of God, so I was trying to just trust He would give me what I needed when we got there. Our pediatrician had the opportunity to speak the epileptologist before we went in and she got him up to speed on our experience with Dr.'s and where Hewitt is at now.
This was the best appointment we've had since this all started 9 months ago. The Dr. was very knowledgeable without a major ego, we talked about med options, treatment options and the different things we've read about them. For the first time in all of this I felt like I was talking to a Dr. that had actually read and studied more about Doose and the treatment than I had. WOW! What a great feeling! I am just praising God right now for his intervention and provision. Hewitt still isn't doing great, but we have a plan in place and I feel quite hopeful about finding something to help him.

Thank you all for all of your prayers. We appreciate your support.

Titus

Through all of this mess with Hewitt we have been amazed at how God has brought His light and love into our lives when things feel so very dark. One of the biggest ways He has done that over these last 9 months is with our other children...but, honestly a majority has been from Titus. Don't get me wrong, we adore all of our boys, but there is something different and special about a baby that the "big" boys have grown out of. We are so thankful to have our sweet, smiling and always entertaining Titus. He has brought so many extra smiles and laughs, it makes the anticipation of a 5th a little less daunting.

Quick Update

Just wanted to post asking for a little extra prayer for Hewitt's safety. Like I posted after our appointment almost 2 weeks ago, we've had a significant set back with seizure activity. We are 98% sure this is due to the reduction we made on his medication. We are hoping things will taper off soon, it's taken a lot longer than we've expected for him to adjust to the new dose and he's had a lot of hard falls this week. All seizure types are back, except the tonic clonics (which is good). We're back to a bruised forehead and we're trying to keep him safe, but sometimes even wearing the helmet around he still isn't protected. He had a really hard fall in the pet store the other night. He fell like a tree, it was bizarre. But, he landed on his face and his hand and we thought he broke it again, but ended up he just jammed his finger really hard. Nonetheless, it's depressing to see him go back to this state. It certainly makes me appreciate how far he's come, but I'm even more eager now to get back to where we were without seizures. I'll try to keep this updated, as we're hoping things will taper off as we hit the two week mark of the medicine reduction.

Changes for the New Year

This has more to do with our overall family, but wanted to share anyway. First of all, we're starting the new year expecting our 5th child in July! I'm almost 13 weeks and we're really excited about the arrival of another little one. Second, after much prayer and wise counsel, Hayden and I decided to purchase a local shipping/postal store. It is a really low key store, only open from 12-5 M-F. Things worked out financially, God opened all the doors so we just kept walking through them. We had our first official day on Friday and Tuesday I will have my first official day with just me and the boys! We'll do our school here along with naps and the other stuff we do. So far the kids are excited and we are too. It will definitely be an adjustment, but this suits us well. I have never been a homebody and staying home and homeschooling has been a challenge for me that way. I am excited to have a place to "go" everyday where we can do school, run a business and be a family! It's less than 2 blocks from the church and less than a mile from our house. Please pray for us as we start this new adventure!

Update - it's a long one.

I realize it's been almost a month since our last post, but not too much has changed. He seems to pick up something new every week which keep the seizures lingering. I always feel like a downer, so I've been avoiding posting, but we have a change coming that we feel hopeful about improving his quality of life.

We had a Dr.'s appointment on Wednesday. It was our first since the end of September. My one objective for the appointment was to convince the epileptologist to get Hewitt off of his current medicine and hopefully onto something else or nothing at all. When we changed Hewitt's diet and saw such a huge reduction in seizures, we also have seen progressively worse behavior from him. It has made life really difficult especially this last month and it's frustrating because with all the increase of seizure activity I just want to love on him, not be disciplining him all the time. (in love of course) But, the kind of behavior we're dealing with is beyond anything we've ever seen with him. The Dr. and I did not see eye to eye on the level of importance for our family and his behavior. She basically told me that I need to realize Hewitt has a difficult to treat type of epilepsy, there's not an easy fix and that I need to be willing to live with some side effects...I told her I don't think it's unreasonable for me to want to take my child off of a medication that changes who he is as a person. She was completely defensive, condescending about our situation and made me feel like we need to start looking for a Dr. that will be part of a team with our family and get their ego out of the way. It was so hard to keep my mouth shut through all of this. I was furious that she felt the need to tell me that Hewitt's condition is complicated and not easy to treat. GIVE ME A BREAK LADY! We've been doing this for 9 months, if there was an easy fix I think I would've found it and probably BEFORE YOU. I can't figure out what my problem is. Dr.'s don't respond well to my input on my child's condition. They can't seem to acknowledge or respect the fact that I know something, that I've spent some serious time researching and many times know more about a certain medication and efficacy of a treatment then they do. I'm sick of it. I don't come into appointments arrogant acting like I know it all. I do come in acting like I'm informed and have the ability to make decisions on Hewitt's behalf. My job as his advocate is not to make them happy, it's to make him well.

So, enough whining about the appointment. This is where we're at now: she only offered me one other med option and she knew it was one I won't use - she even said that as she offered it. Our next step is to start the Modified Atkins Diet. Hewitt will be on 10g of carbs a day! We haven't started yet, but we're hoping to start next week. She also switched his medicine to a tablet form and we had to reduce it by about a 1/4. The liquid solution has sugar in it so we need to switch to the tablet form for the diet. Since we've started this reduction Hewitt has been having massive amounts of seizures again. We're hoping it's just an adjustment, but it's been quite the throwback to see so many again. He's back in his helmet fulltime and we hope things will calm down within a few days. Please pray for his safety as he's already had some really brutal drops and his face his getting all bruised up again. He's resisting his helmet a lot more than he did before.

That is where we're at. I appreciate all of you that have been asking me how things are going and wondering why I haven't posted. Now you know!