Quick prayer request

Titus is sick with a fever and some stomach issues today, and Hewitt threw up last night. I am a little nervous to see if a fever will follow. So far, he's been okay today, but the last time Hewitt had a fever was in the beginning of January and it triggered a massive amount of seizures. Please pray that he will be protected from whatever Titus has or that the medicine is enough to keep the seizures away even with a fever. We are ready for whatever, but hope that this won't be a point of regression. Thanks!

Birthday Pictures

The boys had a great birthday party this year. We wanted to keep it small, so we asked the Mallory family out at Camp Gilead if they would host a scavenger hunt and sleepover for them. They are friends of ours that have 5 little boys. We invited one other family that has 2 boys, so all together we had 11 boys 7 and under! It was a blast. They had a scavenger hunt around camp dressed up in their hero costumes, cooked smores over the camp fire, ate cupcakes and finished the night by watching Kung Fu Panda, and then got to sleep in camp cabins! Thanks to Camp Gilead and the Mallories, (and the Webers for coming too :) )

It was such a blessing to watch Hewitt run and play with the other boys, even running with a light saber in his hand WITHOUT a helmet. Praise God for this awesome break!

HAPPY BIRTHDAY HEWITT!

Hewitt turns 4 today! I can't think of a better way to be able to celebrate his birthday then enjoying it with almost 10 weeks of seizure freedom behind us. YAY Hewitt! He continues to improve in a lot of ways. I think the most remarkable improvement would be his memory. He is repeating and singing whole songs and often times remembering things I tell ALL the boys, better than his two older brothers. I don't know if I shared this earlier but we've been able to relax a little bit on his diet restrictions and he was able to help with cupcakes that we made for his cubbie class at AWANA tonight. Powdered sugar frosting and all. Hopefully they won't make him sick!

We continue to be concerned about his gross motor skills and encourage him to run and play as much as possible. I will be posting an update on a recent meeting we had with the school district trying to get him some services in thier special needs preschool. But, for today, I just want to say, Happy Birthday Hewitt! (it's also Lincoln's 7th birthday) We are proud of the way he's endured this last year and look forward to seeing how things will (hopefully) continue to improve this next year.

At last, A GOOD NIGHT'S SLEEP

I woke up this morning and realized we hadn't heard from Hewitt ALL night long. After a quick panic, and a check of the video monitor, I was able to rejoice that he made it through the whole night for the first time in 7 weeks! It was similar to the feeling you get when your newborn sleeps through the night for the first time. You wake up worried something is wrong and then quickly realize it's all for nothing...that you finally got a whole night's rest and how wonderful that feels! I guess it's a good preparation for July. A nice reminder of those sleep deprived days that we will soon be enjoying again!

7 weeks!

We have hit 7 weeks and are so excited! Hewitt is back to his old self...curious, talkative (understatement), obnoxious and sweet. He has an insane amount of energy and is still struggling with some social skills, but I believe he'll get there! We are loving (sometimes with an effort) every minute of him and feel so thankful to have such a great break. He is singing songs he's learning at church, and last Sunday he even went up front to lead some hand motions for a song with some other kids. I wish I would've known it was going to happen so I could've recorded it...it was such a great moment to witness. He had no clue what the hand motions were before he went up but watched the others and caught on quickly...loving every minute of the attention! He and Titus have also been developing a very sweet relationship over the last few weeks that did not exist before this break. They are little buddies and love to get silly and laugh together.

It feels good to be able to write a weekly update with good news! The sleepless nights are going better. Not perfect, but it feels more manageable. Thanks for the prayers!

Still seizure free

Yesterday was 6 weeks without any little seizures! 4 weeks without any at all. We continue to enjoy having our boy back, and love watching him play like a 3 year old should. We just praise God for this change and are trying to enjoy it while it lasts! Thanks for your continued prayers. He is still struggling with getting a full nights sleep. He wakes often, scared and crying. We think it's a side effect of the new med and hope it goes away soon. It has been 6 weeks though, so I'm beginning to wonder! It would be a prayer request for the whole family. He often wakes up the other boys when he wakes up screaming or crying, not to mention us! We are all slightly sleep deprived these days. I will try to get an update again soon.

#5

We had our second ultrasound today, confirming that we are in fact pregnant with boy number 5! I am currently without comment on this information.

Enjoying the reprieve

Lincoln and Everett headed out of the car to school.

More good news! Hewitt continues to be seizure free. This last Friday was 4 weeks without any "small" seizures. We had a couple relapse days with a few "big" seizures, but we've been without those for over 2 weeks now. He is running around helmet free, without behavioral issues, and we are thouroughly enjoying this time with him. He is showing good progression in potty training again, (self-initiated). It's just such a blessing to have him "back." When we get frustrated dealing with his normal 3 year old stuff, we just remind each other of what we were dealing with a month ago and it makes it much easier to deal with.

Here is a pic of him at our store. He has even been able to play the computer. He's been working on his alphabet and pre-reading skills. AMAZING! Thanks for your continued prayers for his health and that of our family. The two older boys have had a great transition into the public school system and it's been a great break for EVERYONE. I didn't realize how much they needed a break from all of this until they started. They're actually excited to see Hewitt when they get home in the afternoon, and I am enjoying the extra time with the younger two in the mornings. It feels great to be able to give a positive update, and pray it continues.

He's Back

I've been waiting to post this because it seems like whenever I do things change again, but I'll post anyway because it's just so exciting.

Hewitt hasn't had a seizure in 6 days.

It's amazing. Last week, Friday, Saturday, Sunday, Monday and Tuesday, we were absolutely distraught because he was having so many. Last Sunday we finally gave him his emergency meds to stop it because we thought he was in non convulsive status. He was just sitting, barely talking and constantly drooling. You couldn't carry a conversation with him. It was heartbreaking. Sunday, Titus came down with a fever and then passed it on to all the other kids thoroughout the week. Hewitt was the last to get it. It was the first serious fever he's had since we've started this whole journey and if all the seizures he was having before weren't enough, he started having more. In the time he was actually aware and conversational he was mean and angry and hard to deal with. We got his fever under control and the seizures slowed down and then on Thursday, we added a new med, Euthosuximide. It's a med to control absence seizures. He's on a fairly low dose, and only once a day. But, Friday, he woke up alert, happy and hasn't had a seizure since. He has been a doll all week. It's like we have him back completely. Usually when the seizures subside the behavior issues begin, but so far, things have been great. Still doing normal 3 year old things, but no more psychotic anger episodes. He's trying to obey, kissing and hugging everyone and he's told me twice (without prompting) that he doesn't have "ceasers" anymore. He's adorable and we're soaking up every minute of him.

Things are good now, but we know that could change at any moment. We certainly try not to live in fear of the seizures returning because it's way too early to tell if this med will make this change long term. But, we're learning (slowly)to take today and deal with what we've got!

He had an evaluation at the local school district yesterday and today to see if he will be able to be in a special preschool program for kids with developmental delays. This has been hard to swallow, but I think it will be good for him socially and developmentally. Without the seizures, he did great on most of the testing. It continues to amaze me how quickly his body recovers when they stop. We wait now to see what services they will offer and when he will start.

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!

Roller coaster

Another week gone by and another week of fighting colds and tummy bugs and the seizures keep creeping in. I've been really discouraged all week by this return of seizures. He had probably 20 today and 2 big ones already this week. I keep hoping it's just a little tummy bug that Titus seems to have too, but I don't know for sure, he has minimal symptoms. This has me guessing whether or not the diet changes are really going to be the ultimate answer for him like I hoped they would be. They aren't enough to keep all of them away, so we need to figure out what our next step will be. I can't believe it, but I've been considering adding a new med and seeing how it goes. I have been doing a lot of reading the last couple nights about some more recent research on MAE and they in the medical articles they narrow down the treatments that seem to be effective for kids with it. I think we need to be open, there's still a couple drugs that aren't as heavy duty that we would be willing to try. This article affirmed that for me, so now I think we just need to wait out this illness (or maybe winter) and decide what to do next. It has made me realize that it is easy to become complacent with "just" a few seizures a day. I need to get back to fighting any and all seizures. It's not fair to him for us to settle for anything less.

I have tried to make an effort not to overthink things with this. If I get all stressed out and worried it doesn't help anything, especially him. But, this week, seeing more drops...watching him fall 2 feet away from me and not being able to catch him has been pushing me back down that road. Everytime he gives me his sweet smile and I see his little gray tooth (that's gray because he fell on it) it's a reminder of the battle he's in. His behavior continues to decline and I often don't know how to deal with it - which leaves all of us frustrated. This week, the idea of a seizure dog has popped back into my mind. I can't help but wonder if it would be a good distraction for his horrible behavior. Only problem is these dogs can cost up to $15,000 depending on what company you go through. But, lots of people do fundraisers to cover the cost of it all. So, I will research and see what I can find.