Hallelujah!

We received a call today from Children's hospital (who is not accepting transfer patients) to schedule an appointment with one of their epileptologists!!!!!!!!!!!!!!!!

A small miracle by any account. We are praising God. It's in July - (new patients are scheduling out to December) so we are slightly ecstatic and very much in awe.

A glimmer of hope. God is bigger than the screwed up healthcare system. How do I ever question these things? It's beyond me.

The Helmet

So, some of you have asked if he's gotten it yet. They accidentally shipped the wrong one so this is him with a sample they had at Children's. The therapist rigged it up so it would fit him until his comes. It has already saved his little noggin a few times! I did really good until we stopped by the church to show Hayden - and then I lost it for a minute...it's not something I ever dreamed I would be putting on him, but I know it's for his good and it will protect him.

A Breather

Some pics from breakfast this morning. Yesterday, Hewitt was pushing a big plastic car on the floor in the nursery and had a drop, faceplanting onto the car. We took him to the ER later that day to make sure nothing was broken. The bruise kept creeping up his face and it was so swollen we needed to make sure! We decided to give him his "rescue" med yesterday afternoon. He was having so many drops it was hard to keep him safe. We were also hoping it might break the cycle of all the seizures he's been having. It has given us a temporarily breather! We haven't seen a seizure since we gave it to him yesterday. I know it's temporary, but it's been a nice break nonetheless!

more frustration

Today, watching Hewitt I had a sickening revelation. We give him these meds to stop the seizures. The seizures that might delay his development. The seizures that might cause him to fall multiple times a day. The seizures that keep him from interacting. We started Hewitt on his first med after his 3rd tonic-clonic seizure. He didn't start having all of these other types until after. Now, as Doose syndrome onsets it can take time to see all of the different seizure types. But, there are definitely some meds that aggravate seizures for some kids. Watching him for the last 2 weeks, functioning at half of his usual self I can't help but wonder what would happen if we take him off of it. Before this happened I was hesitant to give my children much of any med unless totally necessary. Titus was my first to ever have an antibiotic. To this day, the other boys have never been on one. And, we get thrown into epilepsy and I suddenly am okay with just pumping my kid up with all these medications in the hope that they're going to stop the scariness of the unknown. Meanwhile I have suddenly lost my concern for the unknown of all of the drugs my kid is on. I can't tell if he's all doped up because he's having so many seizures or because he's on so many meds. I don't know if his seizures are actually from the epilepsy or if they're aggravated by the meds. I feel as though I don't know much of anything about WHY this has happened and I have been okay with that. I feel so angry that the Dr.'s won't look beyond the obvious for a why this is happening. We do that for every other thing that happens. But, unless it's something obvious with epilepsy we just say the cause is unknown. I know it's not as simple as that. The brain is very complicated and there is a lot unknown about it. But, we do know a lot about the rest of our bodies. And why wouldn't they look for something else that might be triggering his brian to do this? All day today I just couldn't help but think how ridiculous it is that he is so out of it and still having seizures and it hardly seems worth it to use meds if he's just going to be out of it all the time anyway.

I HATE THAT THERE IS NO RHYME OR REASON TO THIS ALL. I HATE IT. I HATE IT. I HATE IT. There is no limit to the amount of times I can say that to make me feel better about it. I still can't believe this is our life sometimes. That I look at him. He's so stinkin cute. And, he stares off and he drools and he drops and he throws his arms and I just sit here wondering where my kid went and for the first time I am asking why God has let this happen to us. And, even though I know there is an answer to that question - it doesn't always make it hurt less. I know He wants to carry this burden for me, but I have to be willing to give it to Him first. And, every time I think I've given it over I find some way to take it back. I find it in my tears, in my anger, in my frustration, in the meds that don't work, in the bruises on his face, in the stupid ridiculous blue foam helmet I have to put on his little head. I keep thinking I've handed it over and every time it starts to hurt I take it back. I feel like Paul in Romans 7 - ...for I have the desire to do what is good, but I cannot carry it out. For what I do is not the good I want to do; no, the evil I do not want to do- this I keep on doing.....What a wretched man I am! Who will rescue me from this body of death? Thanks be to God - Through Jesus Christ our Lord." vs 18,19,24

EEG results

I was just looking back over the page and realized I never posted anything about his EEG. I talked to the neuro while she was reading it and she said it didn't look good and that he was having a lot of seizure activity. (I could have told her that without an EEG.) We talked about it again last week and all she told me is that it still reads abnormal. This is good and bad. Good in that we're still dealing with the same thing. But, bad because we're still dealing with the same thing. One of the reasons she wanted to do it was because he had been having some leg stiffening for a week or so and she thought it might be a focal seizure: meaning it's coming from one place in the brain. When you have focal seizures it's a good thing, (as far as seizures go) because they can pinpoint where it's coming from and it makes you a possible surgery candidate. Hewitt's continue to come from all over which rules out surgery for him. If you have any more questions about that let me know and I can explain that further. For now, we just have to control them with other means, which we are doing rather unsuccessfully! We just finished day 3 of lowering his depakote sprinkles (the med we introduced 3rd) and he continues to drop a lot everyday and now his absence seizures have increased. He might be having withdrawal seizures though. We won't know for a little while how he's really doing with it all.

My New Babysitter - the Boon Flair

Today was a better day, largely in part because of the images above!
Much to Hayden's dismay, and rightfully so, I indulged on an expensive highchair for Hewitt. (The dismay being that I charged it to my paypal account ;-)) It may seem like a small thing to be so excited about, but, I finally found a safe solution to meal time with Hewitt. After a lot of researching and waiting for one to come up for sale on ebay, I found him this highchair that accomodates up to 50lbs(he's 40) with a 5-point harness. It has a pneumatic lift, (so much fun) I can raise it up so he could help me at the kitchen counter with something, or down low enough to push up to the table. It has castors and it glides around, and is ultra-modern: all of which makes it a PERFECT FIND. It is so cool that Lincoln and Everett are quite jealous and Lincoln asked if we could please buy two more for them. In case you're wondering why I needed a solution at meal time, I will share a quote from another Doose mommy.

"The dinner table was hard as well, I usually ended up with him sitting on my lap…no one but us could possibly understand how dangerous and difficult a kitchen table and fork could be to a child. "



When your arms jerk up and you are throwing whatever is in your hand, hitting yourself with what is in your hand, dropping forward and hitting your forehead, nose, lip, cheeks...breakfast, lunch and dinner become a little bit dangerous. I had previously been putting him in the armchair, surrounding him with a blanket, putting a pillow on the table in front of him and then a towel over that so he didn't get it all dirty. Even with that, sometimes he still hit his face on the edge of his bowl or plate. I have tried strapping him other ways, but he fights it and I don't blame him. FINALLY, I have one place I can strap him in, walk out of the room and I know he's not going to get hurt. (Unless he hits himself with whatever is in his hand, but there's not a lot I can do about that anyway.) This is a praise. I am ecstatic about it and if he would let me keep him strapped in there all day I just might.

Now if I could just figure out how to keep him safe from the hardwood floor, the edges of his bed, the toilet....one thing at a time.

And, one more praise. Hewitt goes in to get his helmet tomorrow. This could not have come at a better time.

Frustration

It seems as though, just when I thought things bad, they got worse. This was such a hard week. I think, the hardest we've had since this began. His drops have been so frequent, it's hard to keep him safe. Friday, Hewitt was sitting, playing in the grass while the other boys rode bikes on our front sidewalk. He got up just for a moment and had a drop while standing in front of the concrete path. The only thing that caught him was his forehead on the cement. It was horrifying to watch. He had his helmet on and when he fell it made a loud crack sound and at that moment I didn't know if it was his helmet or his head and I freaked out. Hayden assured me it was his helmet. Saturday I took him into urgent care because I was still feeling uneasy about his head and while in the waiting room looking at the fishtank, his head dropped and he hit the other side of his forehead on the edge of the fishtank frame. Sunday, he dropped in the nursery on a wooden rocking chair and got another large bruise on his forehead. By the afternoon his right eye was beginning to turn into a black eye. This morning he dropped and hit himself right between the eyes and so now the bridge of his nose is swollen and the rims of his eyes are blue. It might sound like we're not keeping a close eye on him. But, these are just 1 of 50+ drops that he's having every day and we can't catch him for all of them. I would like to just keep him seated with a 5-point harness all day, but that doesn't seem very fun or fair. None of this is fair. I feel so helpless and frustrated with the whole process. I feel like I'm in an abusive relationship with someone that is hurting my child and there is nothing I can do to get out.

A New Kind of Normal

A very kind friend of mine just recently gave me this book. She heard the author at a women's
retreat and thought of our situation. It has been a good book for me to read
right now. Hard at times, because I am not ready to face some of the
struggles I'm dealing with. But, I just want to share a couple quotes from it:

"When I desperately want relief from unrelenting reality... I choose perseverance."


She could not have said it better. I find myself wanting to avoid the reality of our new life so often. It is in many little ways all day long. The fact is: This situation is hard for many reasons. ALL of which I am very aware of. ALL of which God is EVEN MORE AWARE OF. I am being challenged now to persevere through this.

One more quote:

"How do we get to the morning, to the sunshine, to the joy?

There is only one way. By waiting for it.

We can't hurry the dawn,

no matter how anxiously we pace the floor

or how impatiently we watch the clock.

And so the question is not, do we wait

or not wait, because waiting is all we can do.

The question is, How will we wait?

Will we wait well....or will we wait poorly?"

Ken Gire

So, while I still struggle with hope for the day, I can cling to something. I can lay something at God's feet. I can persevere. I am meditating on this scripture right now:

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance, perseverance, character and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom He has given us.

Romans 5:1-5

It seems as though there is hope in my future.

Hewitt

Hewitt at 4 months

Hewitt at 3 years

That last post is a hard one for me to follow because I just want to stay and rest there for a while. I like it there. Hewitt is definitely still doing well cognitively. He continues to improve and today got himself COMPLETELY undressed and redressed. Hayden and I made an interesting discovery. As I was giving Hewitt his most recent addition to his meds this morning Hayden realized that we give 2 of them, not 1! Everytime he had given Hewitt this medicine he had only been giving him one...Sunday morning he had a tonic/clonic seizure a little over 3 minutes and then Monday morning had another one. But, oddly most of Sunday afternoon he didn't have ANY seizure activity. So, now we're not sure if the increase in big seizure activity was because of one of the missed pills and if the decrease of seizure activity was because of one of the missed pills! ERRRR. I guess we will see now how he does over the next few days. It was nice to have a break from all of the drops though. Although, the seizures he had this morning were different than anything we had ever seen before! The only thing constant about this all is that it is always changing.

A GREAT DAY!

Today was a great day. Not only were Hewitt's seizures significantly less than the day before, but he was out in full force and it was so fun. It's amazing how quickly I forget what his little personality is like. I have had this shadow looming over me and it has briefly taken away the memory of him before this all began. We went out to a few places today and had the joy of watching him: he boldly introduced himself to anyone he didn't know, he proudly said his name, he told people how old he was, he pointed out a black car while we were out and said, "that's a black car, right mommy?" he followed 2 step instructions from me while getting ready for bed, he apologized before being asked, told me he will be very gentle with my hair (right after he pulled it and I said "ow"), he is so very charming and sweet...it was really encouraging. So encouraging that I'm sitting here crying while going over it all. We take such small things for granted sometimes. So, even though the day wasn't seizure free we had Hewitt back and that was enough.

More seizure video

It's still not great because it's from my phone. I need to start using the video on the digital camera. I just don't have the batteries charged often enough! This is a typical stretch of what they look like. These are myoclonics, myoclonic astatic and atypial absence. The myoclonics are the arm jerks, the myoclonic astatics are when his head drops forward, and the atypical absence you can't really see, but his eyes are staring off and he's twitching. They often happen together in groups like this.

Brother Bonding

Everett had his 5 year well child check up today and Hewitt needed a blood draw and to get fitted for a helmet. So, I took them together and they had some much needed bonding. Everett got to witness what Hewitt routinely goes through. Hopefully he won't be too traumatized by the whole thing. It takes 3 of us to hold Hewitt and draw his blood. This might be normal for a 3 year old, (don't know) but it is not fun to watch. Everett was not expecting to see that and it definitely got his attention and hopefully perked up his inborne protectiveness over his little brother that I know is in there somewhere. We were at children's hospital for one of the appointments and they have such fun things there. When we got in the car Hewitt said "That was such a fun Dr.'s appointment!" I'm sure it helped they both got new books and stickers to take home.

A shot of testosterone

After Hewitt's EEG on Monday we thought it would be fun to stop by the new Cabela's they put in Hawk's Prairie. It was a perfect little (free) adventure for the boys. We felt a little lost in all the hunting gear, but the boys enjoyed seeing all the displays, waterfall, fish exhibit, camping gear, etc. We had to laugh at how a non-hunting family goes through that store vs. one that hunts. (We have nothing against hunting, we just don't do it.) It was more like a zoo visit and appreciation for all of the preserved wildlife more than it was an appreciation for the kill...we felt slightly hippieish! Hayden is an absolute animal lover and loves teaching the boys about wildlife. A great little school excursion! Here they are posed on a tractor outside.

EEG today

I Will post EEG results later. Here he is all hooked up and ready to go! He is such a little champ. He did awesome for his EEG today. He had to be sleep deprived - hence the dark circles under his eyes. To bed at 11 and up at 6...yuck!