Hewitt Update

Okay, well I have good news and bad news. I'll start with the bad news first.

Hewitt was still having seizures. That will always be in the bad news category (duh). He is mostly having absence seizures. The Dr. said around 4:30am they started increasing until he was having very short ones every 10 seconds after waking up. They seemed to taper off after a while, but I was definitely bummed to hear they were coming every 10 seconds.

Good news. In his quick check through his EEG he didn't see any myoclonic seizures. These are the ones that make his arm jerk involuntarily that I thought I had seen an increase of. He did say he could see why, that he was making some jerky movements with his arms but he said they were NORMAL little boy spasticness. I loved hearing that and I probably wouldn't have believed him until he showed it to me on the EEG reading.

The Dr. spoke at length with me about how Hewitt is doing in school and behaviorally. This is probably my biggest concern right now. He's behind. I know he's intelligent, that's not my concern. It's just getting the information to stick in that sweet little head of his. Hopefully this summer I will be able to spend more concentrated time working with him. His Dr. had a lot of great ideas of ways we could help him and also suggested finding a child psychologist to help us with some of the behavior modifications.

This is probably one of the hardest things we are dealing with right now. It is really hard to watch him with other kids. He really struggles with boundaries and appropriateness and it just breaks my heart to watch him struggle through this. I know God will use it as part of his story - but it hurts my heart. And, sometimes it breaks his. So, we will continue to fight for him this way. ..trusting that there is a purpose for it all.

Our next move is to remove the Keppra from his med routine. Just typing that makes me feel all fluttery and nervous. Hayden and I have talked for years about whether or not this med is contributing to his behavioral issues. It's so hard to know what does and doesn't at this point. He's been on this med since the very beginning though...April of 2008. So, we will take the next 8-9 weeks and very slowly wean him off of that. This is what I would really appreciate prayer for more than anything. This could mean that we might be dealing with exaggerated side effects for the next 8-12 weeks as his body adjusts to not having it. I feel like this is a good move for him, but I'm still nervous about it. We have a medicine picked out to add if we need to add one. I'm hoping we can just stay on the one, but we will see. The Dr. said that they don't treat absence seizures very aggressively at this age. But, if he's still having them when it comes to driving age we will revisit that. So, part of me is excited for this change and the potential for his behavior to normalize but part of me is terrified that removing it will throw us back into hundreds of seizures a day again. Deep breaths - lots of deep breaths. We would covet your prayers for this transition. It has potential to be a very difficult one.

It feels good to have a plan in place and this appointment behind us. We have a busy ministry summer so I'm excited to let go of the school year and jump into summer!

Hewitt and Titus Update

Sorry for the delay on this. Things have been crazy around here. Even more so than usual, if you can imagine that.

Once again I am feeling thankful for God's hand on our search for a neurologist back in 2008-2009. He was a comfort to me in the hospital with Titus, assured me that what he was dealing with was common and really put my mind at ease. He is funny, caring and brilliant. I am so thankful for him! If you are in Seattle area and you need a pediatric neurologist, I HIGHLY (yeah, I shouted that) recommend Dr. Marcio Sotero.

Titus: The EEG showed that Titus is not having seizures. The neurologist explained to me that they're tics and the only reason we even did the EEG was because of Hewitt's history. I am so thankful to have seizures ruled out. It's a huge relief and has cleared a lot of space out of my brain not having to wonder and worry. He did tell me to watch for OCD and ADD, as those tend to be issues that typically arise in children with tics. He shared some great information with me about how common it is for boys to have tics and that for a lot of them it goes away on it's own and never needs medical intervention. I'm so thankful to be able to move forward on this.

Hewitt: Well, he continues to have some seizures. They are almost always absence seizures but I do notice them and this does concern me. I still thinking I am seeing an occasional myoclonic seizure in his hands as well. We have a 24-48 hour EEG scheduled for him in June. The dilemma we are facing now is that he is as high as he can go on the medicine he takes for absence seizures. He doesn't tolerate it at a higher dose. So, if he is having as many seizures as I think he is, we will need a new plan. Right now, we are talking about a diet change for him that would include higher fats, low carb, no sugar. This would be a hard change for him, but I think we could do it and we might just do it for everyone if we do. I don't know, we'll see. We might end up being in the hospital for 48 hours this time. We are hoping to catch these episodes he has at night, so they might keep us in 2 nights instead of one. We won't know until we are there though.

Hewitt came and visited Titus on the second day in the hospital and I caught this great pic of the two of them. I love it so much. We had just ordered Titus' lunch and Hewitt and Titus were exchanging stories about hospital food as I took this pic. It was pretty sweet!

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Hope

Hope Ellen Anderson June 17, 1952- March 19, 2013

If you haven't already heard, March 19th, my mother in law, Hope Anderson, suddenly passed away in her home. Hope had many medical issues, the most glaring was a blood clot that ran the length of one of her legs. She didn't get much relief from this clot and it caused her a lot of pain and a lot of frustration. They believe that clot was most likely the cause of her death. That part of it broke off and went to one of her lungs. We will never know for sure what happened, but we do know she is no longer suffering.

The last two weeks have held a mix of emotions. As some of you might know, my mother in law and I did more toe-to-toe than we did eye-to-eye. Losing her so quickly made the reality of our relationship cut sharp. Although the things we disagreed on were things that I felt were necessary for protection of my own family, it doesn't change the fact that our relationship wasn't the best and that is just hard for me to swallow some days. Death, although simple and permanent, leaves a wake of complicated emotions and grief. Not being able to say goodbye might be one of the hardest things. Not being able to reassure her that despite the years of toe-to-toe I still saw her heart-to-heart. I still longed to see her whole, to see her well, to see her happy again. My heart broke to see her in pain, to see her let go...that all of my disagreement was with the hope that it would shine light to where she was hurting and that light would bring her some relief from her pain. I don't think she was ever able to see it that way while living and it hurts to think she thought I just didn't love her. I know that it doesn't matter now. She is free of pain, free of suffering and for that, I am so thankful. I am relieved for her to be able to leave her broken body behind. I hope as the years pass the hurtful parts of our relationship will fade and these memories will be what shines:

I will remember these things about Hope.

She adored her boys and loved them furiously. She protected them from harm and clung to them for love and hope. She came from a hard upbringing and fought her way out. I wish I could have seen this young Hope - the fighter, the lover, the one who lived full of life and joy.

This woman, she loved Jesus. She adored Jesus. She didn't do Christianity perfectly, but who does? Who ever could? She talked about Jesus, she dreamed of joining Jesus in heaven and she shared that dream with all who would listen. She looked upon this world as a temporary dwelling and in her departure I would like to think she was glad to say goodbye. Excited to run into the arms of her Savior. The only peaceful, perfect protection her heart has ever really known. Goodbye to the pain, goodbye to the heartbreak of lovers lost, goodbye to a broken body that let her down, goodbye to a world full of hate and sin and all that is anti-Jesus. She longed for beauty and redemption.

Nanny, her grandchildren called her. Nanny, was their grandmother that brought them little gifts. Nanny, was their grandmother that loved her little dog. Nanny, loved things that were pretty. She loved flowers and color and all God's living creatures. She found pretties and surrounded herself with them. A gesture of worship to the one who created all of the beautiful things, I think.

This woman, she prayed. She prayed for all things she knew that were hurting. She lifted her family, her friends, her hurts, her struggle, her lost love, strangers as friends, she lifted them all the same...she lifted them to the One she believed could heal and trusted He knew what to do with it all. Her faith was like that of a child.

She was beautiful, she loved, she was full of faith and worship and these are the things I will remember.





All of the family together. She would have LOVED this.

Hewitt and Titus Update

It was recently brought to my attention that I hadn't updated about Hewitt since originally asking for prayer for him!  I'm sorry about that.  We all picked up the virus/bacteria, whatever it was he was dealing with and we were sick for the next couple weeks after.  Thankfully, we are now back to "normal" health.

As far as Hewitt goes - it is hard for me to answer how he is doing.  Sometimes I just hate the question.  There are so many variables that go into it that I feel really frustrated trying to determine what is really going on.  He is able to take his medicine without anxiety again.  That is a huge blessing to us.  And, although he still deals with some anxiety, it isn't as intense as it was that week.  Praise Jesus!  We are still dealing with a high range of emotions with him and I don't always know how to help him with those emotions and that can be frustrating.  We are still on the lower dose of medicine, he is still having noticeable absence seizures and we have an appointment scheduled on the 28th of this month to figure out what our next step will be.

We also will be taking Titus in to Hewitt's neurologist on the 27th for a Video EEG.  He started having some involuntary movements last week.  They came on fairly suddenly and with quite the intensity.  I am trying to remain calm about it but I don't always succeed in that.  I have some days where I freak out and cry about it and some where I am able to just abide in knowing that God knows what is going on and I can trust that. The hardest part right now is just waiting for answers.  I really want to say that I don't think they're seizures but I don't feel like I can rule it out yet.  They look like tics, and while that would definitely be preferred over seizures, it still makes my mama heart sad.  If they keep going on like they do, my sweet boy will likely be a target for teasing and THAT is really hard for me to swallow. Titus is one of the most joyful and fun kids I have ever known.  I hate the idea of someone ever taking that from him.  I know I can't protect him forever, whether he has a tic disorder or not, but that doesn't mean I don't want to!

We would definitely appreciate prayers for the VEEG - we will be there for about 24 hours and Titus is not one to sit still.  This medical stuff is all new to him so I hope it doesn't scare him.  Also, for wisdom in knowing what our next step for Hewitt should be.  Thanks!

Hewitt update

Since I've asked several people to be praying for Hewitt, I figured it would be a good time to do an update on here about what's going on.

We did a medicine increase a month ago and it is one that we have slowly been increasing him on over the last several months.  Every time we do an increase on this specific medicine we see a lot of side effects for a couple weeks.  They include erratic behavior, exaggerated emotions, anxiety and hallucinations at night.  That's normal stuff for him - when it's temporary.  Last week I noticed that he hasn't quite hit baseline yet.  He's still having hallucinations at night, his emotions are still all over the place and his anxiety has hit an all time high.  This week his anxiety was so high that he can't take his medicine without making it into a huge ordeal.  One of his meds gives him a stomach ache and he's gotten so anxious about it that he's made himself throw up just anticipating that he's about to take them.  This morning he refused to eat breakfast (which was a cinnamon roll for goodness sake) because he knew if he did there would be enough food in his stomach to take his medicine and didn't want to do that.  The problem is that if I give it on an empty stomach, he'll throw up anyway, with or without anxiety.  So we are in this place where we're trying to keep him distracted from thinking about it but he's giving himself a stomach ache every time it comes to mind.  So, that's the first issue.  Meds and stomach pain and making himself throw up.  The second issue is that his night hallucinations changed this week.  They have become these weird anxiety attacks where he can't articulate what's wrong he is just in a panic and can't get more than a few words out at a time.  The things we say don't make sense to him and it's just overall weird and it doesn't feel right to me.  I'm wondering if he's having complex partial seizures - I don't want to get ahead of myself, but it's such strange behavior.  The third thing is that he's also just been kind of odd in general.  Lincoln called it "delirious."  His eyes are kind of half open all the time and he's complained about his throat hurting but doesn't have strep or any other cold symptoms.  It's overall just really bothering me.  If it is a virus, it's the first one that's come into our 1400 sq foot house where 8 people live and spend almost all day together homeschooling where no one else has gotten sick.  That doesn't sit right with this mama.  We've also seen some very noticeable absence seizures throughout the day - ones that were much less noticeable before.  Right now he's outside playing with his brothers but I guarantee you that he will come in and be EXHAUSTED and even possibly fall asleep on the couch when he's done.  Not normal Hewitt behavior.

I called his neurologist and talked with a nurse and the info relayed back to me was to reduce his medication by a little bit for a couple weeks and see if things improve.  I'm not super comfortable with that (although we are doing the reduction) so I took in him to the pediatrician yesterday to see if he would do blood work and possibly order an EEG.  He did a strep test to rule it out and wanted to wait for the fever to subside before he ordered anything else.  We go back in Monday.  As of today, he still has a 99.4 fever though.  I really hope that I'm wrong and that there isn't an increase of seizures or a potential blood issue or toxicity from his meds....that would all mean some scary changes for how we're treating his seizures currently and I really don't want to walk down that road we were on before.  The thought of having to take him off of the med that is causing these other problems is actually terrifying to me.  This med was our miracle.  I also plan to call his neuro again if the Dr. thinks it's necessary to order more tests.  Best case scenario is that he has some odd virus that is giving him a fever and it exaggerating the side effects of his meds.

That's where we're at.  Hoping it's nothing serious, but mostly just want some answers.  I'm trying not to get ahead of myself but I want to be his advocate and his voice and I have to do some reading and inform myself if I'm going to do that appropriately.  I've been educating myself on some of the more serious negative side effects of his med so that when I go in on Monday I can be armed with some information! I know that God already knows what's going on and there's great comfort in that.  Now I just need to relax and trust that He is in control and that is what is best for all of us!!!!

Playing catch up

I've been such a terrible blogger lately - but I'm hoping to get a little caught up and then do some steadier posting!  So, here are some of the things we've been up to the last couple months:

We found the pool on the left at a yard sale this summer for $5!  Hands down, the best $5 we spent all summer.  We spent a lot of time in the backyard with the older 4 cooling off in this little pool and learning some great swimming skills!  Phoenix had a much harder time keeping his head above the water in that pool so we set out to find him something smaller and somewhat durable, so we found the little turtle pool  (actually I think it's a sandbox) at another yard sale for another $5!  He had so much fun in this - we have video of him running and jumping into it! He loved having it all to himself. The last picture on the right is our back patio.  This house has a covered patio that runs almost the full length of the house!  I had a lot of fun setting up a little living space out here with some extra furniture we weren't using inside.  We found the little outdoor fireplace on Craigslist for $15 too! What this city lacks in decent thrift stores, it makes up for in yard sales!  My goodness, there's a lot of yard sales around here!

We ate at Costco more times than I care to admit.

                                                                      because of that fun pool we found, we spent a lot
                                                                      of time wearing goggles...a lot.

                                                                              We went on a church camp out to Boardman, OR. 
                                                                        We played in the Columbia River, rode scooters,
                                                                     and played chess with a wise G'pa from our church
                                                                     with a gift for teaching! 

I found a few projects to work on - like this one - which still needs some tweaking - but is a nice alternative to a plastic water or iced coffee mug! 

We played (oh so carefully) with friends down at the Columbia river.  Swimming, digging in the dirt and looking for fish to catch!  We found a sweet spot by the boat launch..trust me, it's safer than it sounds. 

We celebrated Titus turning 4 and Phoenix turning 2!  Phoenix also really enjoyed the discovery of worms...or did he enjoy it?  I can't tell for sure from this picture.

We found an orchard in Yakima and picked blueberries, apples and pears and promptly ate all three (55lbs worth) within a week and a half of getting them home! 

Hewitt and I spent some time at Swedish hospital in Seattle doing some diagnostic testing for his epilepsy.  He did an admirable job of hanging out in bed for 36 hours...especially for a 6 year old!

We rejoiced (okay, *I*, rejoiced) in all the non homeschooled kids going back to school so we could play at our favorite park again without running the risk of losing a member of our family in the mob of children that play there in the summer.  These 5 look thrilled to pose for me don't they?

Having (real) espresso with a former student in Seattle.  (Love you and miss you Leslie)

Painted Hewitt and Titus' room and we're slowly working on finishing the details.  One of the fun projects I did was recovering this lampshade in yellow yarn!  I really love how it turned out and love the yellow with the color of the walls!

A gracious friend shared a huge bounty of basil with us and the night before going into the hospital Hayden and I put up all this pesto in the freezer!  Yay for a stock of pesto.  I used it in a pasta dish 2 nights ago and the boys said it was "THE BEST PASTA I'VE EVER MADE."  They also didn't eat their lunches that day because the broccoli cheddar soup I made was NOT the best soup I had ever made and they were particularly hungrier than usual.  But, we'll go with "THE BEST PASTA" anyway.  Every mom loves to hear those kinds of compliments on dinner!

And, here we are, the last pic of "just" the 7 of us before Hayden and I headed into the hospital to meet the new little one!

And many hours later - we have some proud big brothers.

A beautiful thing happened when the boys got to the hospital to meet him.  He had been pretty fussy since birth - about 2 hours.  He just couldn't get settled for some reason.  As soon as they came in and started making all the noise that 5 boys make, Kingston settled right down.  He knew.  It was familiar.  I loved it!  It was such a sweet moment and a story I suspect I will be telling for years to come! 

                                                                

A Trip to Swedish

Hewitt and I head back over the mountains tonight.  We have been doing a lot of travelling these last few weeks so I'm glad this will be our last trip for a while.  We check in at Swedish at 8am tomorrow morning and will be having a 24-48 hour VEEG (video eeg) done on Hewitt.

I would definitely appreciate your prayers for patience for me and endurance for Hewitt!  Last time we did this he was 4.  I'm having a hard time imagining my active 6 year old hanging out in bed for 24-48 hours without some resistance!  We are equipped with books, books on cd, playaways, some school and some movies (Praise God for the library)!  Hopefully we'll be able to keep him distracted!

After upping his dose back in July we will be looking for any seizure activity they didn't catch on the 1 hour EEG back in July.  Also for any other activity while he is sleeping.  He often has "episodes" at night that are very strange and we are trying to find out if those episodes are seizure related or something else!  I will update when we get home.  Our epileptologist will be monitoring him at the hospital which is great, we haven't seen him in a long time so it will be nice to have his feedback on everything.

the appointment

the conclusion:

Hewitt was really excited for the appointment, I'm not really sure why - but he was really looking forward to it.  We had a fantastic technician who worked so well with him, I praised her tremendously because she seemed to know just how to put him at ease!  When we got in there though and they got him all "hooked up" his nerves kicked in.  He told me he was scared and that he felt like he was going to be there for "ten years!"  I reassured him it would be less than an hour and he settled in for the test.  Hands down, it was the easiest EEG we've ever had.  Amazing how much easier an EEG is with a 6 year old than a 3 year old!

Hewitt is still having seizures.  During the EEG there is a 5 minute period where he has to breathe deeply.  It's pretty challenging for a 6 year old (or anyone I would think) - we put a little pinwheel in front of him and he blows on it to make it spin for 5 minutes straight.  He did a fantastic job.  It was during this period that he had a few absence seizures.  We met with the Dr. after the EEG and she recommended upping his dose of the medicine for the absence seizures.  She is thinking that a lot of the odd behavior is related to the increased seizure activity as well.  The EEG was nothing like it was when things were out of control, but also not as "good" as it was 2 years ago when the seizures first stopped.  We will up his dose, check his blood levels in a few weeks and go back in September for a longer 24-48 hour EEG.  Hopefully the increased dose will be more appropriate for his increased size!  He was 4'3" and 58lbs!  When they gave him the dose - I don't know how tall he was but he weighed around 42lbs!  He was 99.7% for his height and I think 90% for his weight!  I knew he was tall for his age, but that caught me off guard!  It seems fitting that for that much of an increase that his dose should bump up.

my response:
What is there to say?  After she told me there were some seizures on the EEG, I fought to hold myself together for the rest of our appointment.  I went into this appointment with the door closed on this part of our life.  I had said goodbye, I had convinced myself that the seizures were gone and that he'd grown out of it.  I am so far past where we were 2 years ago I hardly knew how to respond when she came back and said he had some absence seizures on the EEG.  Not only did he have a few on there, they happened when I was sitting in front of him, holding the pinwheel in my hand watching him blow on it.  I didn't even notice.  I didn't even notice.  He was sitting in front of me and I didn't even see them, how is that even possible?  My pride was hurt.  I felt like a failure and I know I can't beat myself up over it, I had no way of knowing, but  I have been following my "mom gut" through this entire process and to be so far off base really threw me.  I guess I got a little ahead of myself and maybe even confused my fantastic ability of disconnecting myself from things I hate with an actual peace about the situation.  At this point none of that really matters.  What matters is that we have a new plan in place.  What matters is that we are still fighting this beast.  And as much as I want to mourn the reappearance of these wretched seizures I have much to be thankful for:

*Hewitt is no longer wearing a helmet to protect himself!
*The seizures are brief enough that they aren't noticeable to us.
*Hewitt is learning, growing, progressing in all stages of life, including spiritually and that is beautiful, regardless of seizures.
*We live in a place where we have access to state of the art diagnostic tools and we have an extraordinary Dr. that knows how to use them and cares about Hewitt.
*We have health insurance
*We have a beautiful, thriving, smart, compassionate, imaginative, spunky 6 year old that God uses in our lives to challenge us to grow, to love, to look out for the underdog, and to fight for life!

 

Hewitt update

Next week we head to Swedish to visit Hewitt's neurologist.  He has an hour long EEG and then we will have a follow-up appointment with his neurologist to talk about our next steps.  He is currently still on 2 medications and we are hoping to begin a slow wean of those as he has been without seizures for OVER 2 years now!  Woo - hoo! 

Lately we have been seeing a lot of strange behavior from Hewitt and it's been hard to watch.  He has been incredibly moody - ranging from depression symptoms, giddy/happiness, grumpy, etc..  I realize that all children have mood swings, but this is something different.  It's like an extremely exaggerated version of all of those things.  The hardest one to watch is depression because it just seems so unnatural for your 6 year old to talk about hating himself, how he's ugly, etc...it's pretty heart wrenching.  My theory is that with each growth spurt he has, (which if you've seen Hewitt lately, you would guess there's been a lot)  his body has to readjust to the dose of medicine that he is on.  As though we had lowered the dose and he is readjusting to that.  His dose hasn't been changed since right before his 4th birthday in 2009, so it makes sense to me that this could be the cause.  I am really hoping that is all it is and that it's not some other neurological issue for him to deal with. 

I will update again next week when we have a new plan in place.  I am super excited at the prospect of weaning him off these drugs and seeing what he is like without them in his system!

letting go

There was a lot of speculation as to whether or not baby #6 would be a girl and whether or not I wanted him/her to be a girl. A LOT. Obviously when you have so many boys already there is part of you that has just resigned yourself to accepting your life as the only female in your household. I pretty much did that around boy #3. At that point, we didn't know how many children we were having. We have always said we would take it one at a time and go from there. I'm sometimes surprised we didn't stop with #3 considering the challenges he brought and how COMPLETELY different he was from his very chill older brothers. But, with those challenges came a uniqueness that I cannot imagine our lives without.

So, for the many of you that have asked, and some that haven't. YES, I was bummed it wasn't a girl. When the sonographer said it was in fact another a boy I was stunned, and for about 10 minutes, I held the tears in. Then I thought of Everett, my sweet little nurturer and how sad he would be when he finds out it's another brother. I felt sad for him. I felt sad for all of the boys that they would miss the opportunity of having a sister. I just kept saying "really?" "Is it really?" Is that really possible?" For the first half of this pregnancy I've been saying with my mouth "it's going to be a boy, of course it is" while in my heart hoping and longing for a girl. I want to buy girl clothes. I want to do something remotely feminine with SOMEONE'S room and while that is all good and fun, those aren't exactly soulful reasons to want a girl. I am always thankful when we find out that the baby is healthy and there aren't any complications - I certainly don't want to minimize the tremendous blessing of a healthy baby! God has been working on my heart though and I am always amazed at His timing. I had the opportunity to see an old friend last week and I was humbly reminded of the simple fact that I am fertile and there are so many people that aren't. I have had 6 healthy pregnancies and that is an amazing and beautiful thing. There will always be a part of me that wonders what a little girl from us would've looked like, sounded like, all of those traits that encompass that. But, at this point, I'm excited for what IS and thankful for my sweet little (or not so little, depending on your perspective) family!

*****And for those of you that might be skeptical like me, it wasn't the umbilical cord. As you can see in the pics it is VERY clearly defined. So, I am so thankful for ultrasounds and for the opportunity to prepare myself for the arrival of another boy! There is something fun and unique about having all of one gender. I look forward to meeting this new little one!

Playing Catch Up

This last month has been full of blessings, hardships and turns that I never saw coming!  Because of some of these things, blogging has taken a back seat for a while.  I miss writing and I hope to get back into some kind of routine again.

Just some of the things:

Announcing the arrival of our newest babe!  That has been more of a blessing than I expected it to be.  I tend to dread sharing it with people because I really don't want other people's negative opinions to taint my fun blissful excitement about this baby!  So far, people have been gracious, encouraging and loving about it and that is a huge blessing to my heart!

We had about 3 weeks of company in April.  It started with a fun visit from a college friend, Kelli, and then my sister, Katie came and joined her for a couple days. It was so great to spend some time with people that just "know" me - and I "know" them and we could just relax and enjoy the awesome weather we had that week.

 After they left, my mom came and hung out with us for her spring break.  It is always such a treat to get to have "Mom time."  It doesn't seem to matter how old I get, I will always need my Mama!  I am thankful we have the kind of relationship that makes our time together enjoyable still!  I know that isn't always the case, so I praise God for healthy family relationships! 

After she left, Hayden's mom, Hope, came to visit for a week.  It's the longest amount of time we have spent with her since we got married 11 years ago!  I wasn't sure what to expect, but we had a nice week together.  The boys loved having her around, we hadn't seen her in over 2 years so it was really a treat for them.  She was coming out to meet with a potential job prospect with the idea of moving her out here closer to us shortly after.  The plan was for Hayden to fly back out to Kentucky (where she lived)  and drive her over here with her things and she would start the job she had arranged. 

Hayden flew out Easter Sunday at 6am.  When he arrived at the airport, she wasn't there.  He called her and she was really confused and thought he was coming in on Monday.  This was really strange because she KNEW he was flying in on Sunday I listened to their phone conversation and there's no way (from his side that I heard)  that he said it wrong.  So, she said she would call Mel, Hayden's sister in law and they'd drive the hour out and come get him.  He waited 2 more hours, and there was no sign of her.  At this point he had started calling her and Mel without any success of getting through to ANYONE.  I suggested calling his brother (who was in Georgia at the time) to see if HE could get a hold of Mel.  He did get a hold of her and she also thought Hayden was coming in on Monday and hadn't heard form Hope that day.  She drove over to Hope's home to check on her and found her disoriented, confused, not knowing what day it was or that Hayden was waiting at the airport for her.  Mel called 911 and got her in an ambulance.  Something was not right!  At this point Hayden had been at the airport for over 3 hours.  It would've taken Mel another hour to get to him but she went to the hospital with Hope.  After doing a CT scan they discovered Hope's brain was bleeding and wanted to transport her to a bigger hospital in Louisville right away.  We decided to get Hayden a car rental so he could get out of the airport and free Mel up to be with Hope. 

When they figured out what was going on, Hope had a 6cm bleed on her front right temporal lobe.  This is a huge bleed and was causing a lot of pressure and pain for her.  Thankfully it wasn't in a portion of her brain that affected any motor skills.  They needed to do surgery to remove the clot.  When they got in there the area affected was much larger than they initially realized.  They were working with something the size of an orange - between dead brain matter and clotting, they removed a portion of her brain, and left some of the clot where they couldn't tell if the tissue was dead or not.  They stapled her skull back together and waited for the swelling and everything to go down.  She was doing really well after surgery and miraculously is doing great today.  She hasn't lost any physical functions at all.  Her short term memory still seems to be slightly affected, but she has all of her long term memories pretty well intact. (as far as we can tell)  It's hard for me to gage if it's changed her personality all that much.  The area it hit is the area that affects behavior, personality, etc..  But, never being around her for longer than a week or less at a time.  It's hard to tell.  I don't think a stranger would notice or think twice about it if they didn't see the huge scar on her head. 

So, during the week Hayden was out there and she was in the hospital, we both came to the conclusion that if she needed to recover she needed to come here.  She had already sold her home at the prospect of coming here and Hayden's brother and his wife don't have the resources to care for her.   We really felt a peace that it was God's desire for us to do it, so we took a step of obedience and did it.  We flew out last Monday morning and drove her back to Richland.  We made it home Wednesday night and she is now a part of our household.  The rehab center she was discharged from estimated it would be another couple weeks before she could be on her own again.  So, we are hoping to help her find a job to get back on her feet again and move into her own place once she seems able to do that again.

It has been a beautiful thing to see God's hand woven throughout this whole ordeal.  From the timing of Hayden being out there, to finances and everything in between.  It has been clear who is in control and that is always so comforting in a crisis situation!

That is our crazy last 5-6 weeks!  It has been an adjustment having someone here all the time - especially without knowing how long of a situation it will be.  She and I have had a polite relationship over the years, but I would never describe us as "close."  We have very different personalities and interests and at this point and I am just trying to take it one day at a time and trust that God will give me what I need to deal with each day.  So far, I'm failing miserably at that...but, it's only been a week.  I'm hoping I'll be more willing to give things over to Him soon or this is going to be a much longer and harder road than it needs to be! 

We would definitely appreciate your prayers through this time!

Hewitt

I haven't posted anything about Hewitt in a long time.  He is still seizure free and it has been a year and a half.  I seriously love being able to type that in there.  His next neuro appointment is in December.  If Hewitt is still seizure free at that point we will schedule an EEG for January and if that is "normal" and seizure free we will begin the slow wean from the Keppra.  If things continue to go well, then we will also slowly wean the ethosuximide.  I cannot wait for this to happen and to see what my boy is like without all these meds in his system.

I have had a lot of people ask me if we think he could grow out of the seizures.  A long time ago I posted about how kids have about a 60% chance of growing out of this type of epilepsy.  I can say, that in my soul, I feel like he's grown out of it.  I really think it's gone.  I know there is that small chance that I could be wrong, but the mom instinct in me says it's over.

Hewitt is 5 and these are a few of the things he's doing that we rejoice in!
1. Riding a two wheeled bike!
2. He knows all of his letters, letter sounds and is reading simple 3 letter words.
3. Coloring, writing, cutting and enjoying all kinds of kid crafting.
4. Running, jumping, climbing trees, riding bikes and scooters and exploring outside.
5. Being obedient, kind to his siblings (not always, of course), and having an overall happy attitude!

He is no longer wearing a helmet, scooting on his bottom to get places, zoning out, falling down, throwing screaming raging fits or sleeping his life away.  And, although there are things about him that still concern me, they are things that can change with environment and training.  They aren't influenced by the force of seizures anymore! 

Rejoice!

Still Doing Great

Hewitt at Tolmie State Park last week with his cousins.


Things are going GREAT! Hewitt is still seizure free. The only thing that hasn't really improved is his sleep disturbances. We're coming to accept his wakefulness at night as part of this ordeal and hoping he will eventually grow out of it like he is hopefully doing with this awful condition! We are just thankful to have him well, with us, growing, listening, loving and just being an ACTIVE part of our family again. He LOVES his new baby brother and has been so sweet with him. It's still amazing to me that things stopped so suddenly and for so long now. Much praise going up to our Savior!

Some updates

May is a busy month for our family and I am so behind in blogging! Hewitt continues to be seizure free, although he had a fever last week and I could have sworn I saw some hand twitching in his sleep, but in the daytime we never saw any proof of it. I'll never know for sure, but rejoicing that they're still gone.

Praises - Hewitt is potty trained in the daytime - even through nap. I was beginning to wonder if this would EVER happen and haven't pushed it because of everything else he's been going through, but I feel like we're finally over the hump! (for now anyway)

Last week he woke up having hallucinations about spiders and was up for about 4 hours convinced there were spiders everywhere, including crawling on him and us. It was absolutely horrible, but thankfully it's all over and we haven't seen any more of this night time behavior since. We think it was most likely his medicine, but we're starting to see this side of Hewitt we haven't seen before...he's scared by things fairly easily. Much easier than his brothers. This has really caught us off guard as he tends to be the "tough" guy around here. It's nice to see his sensitive side though. This week there's been a bear roaming around Shoreline and he was very fearful that it was going to claw it's way into our house!

He is memorizing whole books and reciting them back to us as he looks through the pictures. This is amazing and such sweet music to our ears. Not only that but he's retaining all kinds of songs not only from the radio, but also from church. It's so fun to see him engage and have interest in these things again.

Prayer requests - Next week is going to be a very busy week for the whole family. Hewitt does not like leaving home often and we're going to be going A LOT. A few of the things happening:
-we're in the process of moving across the neighborhood, we'll be closer to the church, closer to the school we want for the kids and saving some money. we're halfway moved, but need to finish this weekend
- we have a civil court case on wednesday (27th) morning very early that we're nervous about. someone is trying to squeak 5k out of us, and we hope that the truth will prevail and we will not have to be stuck with this debt
- our annual graduation celebration is the 29th, the friday following our court date and we have much preparation to do for this. we have lots of help, but it's still a lot to be done in one week - hayden will be taking the teens to an event the following morning (30th) as well
- the following monday (june 1st) hewitt has a 24-48 hour eeg scheduled. we're checking up on his progress, trying to see if he's having anything going on in his sleep or seizures that we're not seeing. he still has days that he acts like he's had them even though we're not seeing anything.

So, if you're still with me. We covet your prayers and appreciate your support through all of this. My next update will most likely be after our court date or after the EEG.

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.

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.

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!

Appointment with Dietitian

We had our appointment with the dietitian yesterday. I wasn't sure what to expect going in, because we've seen such good improvement with what we've been doing we didn't know what else she would help us with. He is still having some lingering seizures, most of which come from deciphering which sugars are okay, or him eating something with dairy. Because of these, she wanted to just keep going down the road we're on instead of starting a whole new diet. I appreciated that because it seems silly to do something totally different when what we're doing is working! We still have our appointment next week at Bastyr as well, so hopefully between the two we'll come up with a good plan. For now, she wants me to cut ALL kinds of sugars out, not just refined, reduce his carbs and up his fat and fiber intake. I'm still trying to decide if I want to do this yet. Things seem to go really well as long as we're careful about what he eats and we keep him regular. He already has so many restrictions as it is, if we don't have to restrict more it would be really nice. On the other hand, if the seizures pick back up again, we'll gladly make changes and see if it helps.

The dietitian was nice, well organized and knew her stuff. I still couldn't get her to recognize the significance of the changes we've made and the results we're seeing. That was frustrating. But, hopefully next weeks appointment will be more helpful.

Hewitt is continually improving cognitively. His memory is functioning much better and he just LOOKS brighter and healthier. It's an amazing blessing and I'm so thankful for God's timing with all of this. I can't imagine trying to home school the boys and keep Hewitt safe from all of his falls!

Update on EEG

I finally got a message from the Dr. today about Hewitt's 24-hr EEG. She agreed that his diagnosis should remain MAE/Doose and not be changed to Lennox Gestaut Syndrome. We are thankful of this. Although they are similar, we would prefer to have an MAE diagnosis as the prognisis tends to be less grim for their development. Woo-hoo! Now we get ready for our appointment with the newest epileptologist next Friday and yet another EEG!