Oy Vey!

So much has happened in our lives, and I'm sure yours, since July. I am certain there is much to say, but I will try not to overwhelm all you lovelies who love us with a forever long post. (I'm sure with such sudden rambles I am instilling great confidence in you already...) All right, you might be in for it. Get comfy now while I try to break it down.

August began with the purchase of a new house, new to us anyway. It is a lovely home not far from our current home (yes, we are still in the "regular house" as Eliana calls it and have yet to move into the "new house"). After about 3 1/2 years of looking, we finally found pretty much everything we wanted. It is a solid brick ranch with a walk-out basement and an in-ground pool. It has three bedrooms upstairs and one in the basement, two fireplaces upstairs and one in the basement and is about double the size of our current home. It is in a small neighborhood made up of neighbors who love to be neighbors and have three parties a year just to enjoy each other. The house belonged to a friend at our church who lived there from the house's beginning and actually designed it himself. He kept it in excellent condition, though not in our taste. We have been working since August removing wall paper and flooring (mostly carpet), knocking down a half wall and deck, painting, laying hardwood, et cetera. et cetera. We are hoping to be in the new house mid-late January. The next big project is the kitchen and a slightly smaller project, the hall bath. The bedrooms, living room, entryway and dining room are all finished save some base molding. You can see a few pics below. We'll put up new ones of the finished product when it's finished. :)

The house is a big deal, no doubt, but I'm not sure it is a bigger deal than Lucas beginning Kindergarten. He started in mid-August and he loves it. He has a new teacher, fresh from school. Miss Ann is her name and she's fantastic. She is everything we would ask to have in a teacher/care giver for Lucas except that she hasn't had much experience, but her enthusiasm to learn and ability to take everything in stride and with a smile leave us not wanting for anything.  There are others around to lend a hand or word of advice and it doesn't seem to matter that she hasn't walked so many things herself; she's walking it now and she's walking it in style. :) (We love you, Miss Ann!!) Miss Ann has two assistants, Ms. Elizabeth (or Ms Liz) and Ms. Barb. They are great too. Actually, everyone has been great. Lucas is at a St. Louis County Special School District school, meaning everyone in the school is a Special Ed kiddo. I love that we walk through the halls and people I don't know, know Lucas. Everyone is caring and excited to be with the kids. From principals to nurses to art and PE and Music and Therapists and everyone else, we love it. Thank you all, Ackerman staff. You are amazing!

I am hoping that by the end of the school year Lucas will be walking regularly and feeding himself. I don't know how close to achieving these goals we are, but we are working on it. When school first started, he was super stressed, trying to stay awake and participate in everything. He was loving it, but it was pretty hard on him. He ended up with a blister on his chin that he almost immediately popped from rubbing his knuckles on his chin. He also had a ton of seizures. Going suddenly into a new routine of 6 1/2 hour school days, five days a week was rough. He was having a ton of seizures, over 100 many days. I figured it would take some time to adjust to the new routine, but I was hoping it wouldn't be so bad as it was. He would push himself to stay awake all day and then get in the car after school and scream all the way home and often after we got home for a while too. He was passing out super early and waking super early and both he and I were moving into the manic zone, with cliffs we could descend into utter darkness at any moment. I had just enough manic in me to keep me going without nearly enough sleep, but I was exhausted enough that I was still able to sleep when I had the opportunity. Lucas was manic enough to make it through school every day with out sleeping, in spite of countless seizures, but began spreading his screaming tendencies to every car ride. Eliana learned to fall asleep to his high ptched wailing and Marc thanked God that he didn't have to be in the car with us that often.

Also in August, we had our appointment with Dr. Rohrbaugh, the doctor who worked in the same office as Dr. Burris. He was kind and had some good input for us, but overall, I don't feel confident that we had the best communication. I don't know that he heard me or that I heard him very well. I could just be yearning for another Dr. Burris (which I will readily admit), but he didn't quite fit into what I wanted to find. I was feeling particularly desperate with the anxiety Lucas was having since beginning school. Dr Rohrbaugh did suggest beginning giving Lucas magnesium to help soothe his anxious temperament, which also has helped with his constipation issues. Win-win. :)

September was mostly full of wallpaper removal and mudding and sanding and painting. The most exciting thing was our first Special Olympics event. Special School District does a lot of Special Olympic events. Our first was a T-ball game. It was a beautiful day and we took plenty of pictures. Lucas was slowly adjusting more to school hours and started falling asleep -occasionally- at school. He continued screaming in the car.

October began with the building of a new deck on the new house which turned out gorgeously. Mid -month we had an appointment with Dr. Altman, a neurologist out of St John's Mercy, a closer drive for us which is nice. I felt more comfortable with Dr Altman than Dr. Rohrbaugh. I felt like there was more ease of communication. This is nothing against Dr Rohrbaugh. It could have more to do with my mental and emotional state than anything else and I felt like Dr Altman cradled me a bit more. After beginning school, we had a couple of our worst days ever, 300 plus seizures. I was pretty frazzled. Leaving Lucas in the care of new people, capable people, but as yet unfamiliar with all of Lucas' little quirks and twitches and seizures, was a great added stress for me. His pushing himself to stay awake was reeking no little havoc. I felt I needed someone who I felt was with me and I felt like Dr. Altman was willing. We have been giving Lucas Felbatol for nearly 3 years now. We have never thought that it offered much improvement. We have wanted to take him off it for a long time. We stayed on it to have it as a baseline drug as we tried other things. Felbatol has a few unfavorable side effects, like liver failure, while Keppra has none. Since he's on Keppra, let's drop the Felbatol, right? Dr. Rohrbaugh wanted to increase the Felbatol at night to see if it would help. We didn't. Dr. Altman said we could drop the Felbatol and try something else. That probably weighed heavily on our decision to stick with Dr Altman too. Dr. Altman suggested trying ONFI. Lucas took this drug back when he was around a year old. We got it from Canada because they didn't make it in the States yet. His seizures increased and the limited beginnings of speech that he had ("mama"and "dada" and some other sounds), disappeared. We were very frustrated with it at the time. He has not had any speech return since then. Now, however, we figure we can try again. Perhaps it will inspire the opposite and his seizures will drop and he will begin to make strides in speech. ???

October also saw some Special Olympics bowling and Soccer (which was a huge event!) and a field trip to the pumpkin patch. We had a visit from Marc's sister Michele and Hubby Dave and sweet baby Darla. (We, apparently, took no pictures this visit though. You'll just have to take my word for it that the kids were super cute and we had a great time!) Lucas and Eliana were both sick, her with a respitory infection and him with a urinary tract infection (UTI). I think that he has had this UTI for months because his pee has been stinking, but he hasn't had any other symptoms until he had some purple pee in his diaper. (Yeah, purple. I'd never seen that before. Like watered down grape Kool Aid.) She got better. He got better until...

November his pee started stinking again. It still stinks. I think in the new year, we are going to have to check in with the urologist. He's done two rounds of antibiotics. No more purple pee though. :)

Lucas has been much more well adjusted to school since November. He is sleeping better and keeping a more regular schedule. He typically goes back to sleep for a while in the morning before school. His seizures have changed since school started. He was having smaller, easy to miss seizures a lot. The kind that add up to 100+ pretty easily. They have been moving into more obvious ones, bigger, harder, more likely to make him sleep after having one. This means that numbers have dropped significantly, but severity has increased. I think I would rather have these than hundreds of tiny ones though. Actually, to be more specific, I would rather not have any.

Thanksgiving we drove down to Farmington, MO for a feast with my mom's family. Lucas was screaming, as usual. It's almost two hours there and two hours back. That's a lot of screaming. I sat in between the kids in the back to try to help soothe our sweet boy. With a yogurt assist, he calmed down and we have not had such terrible car rides since, Praise the Lord!! He will still fuss and occasionally scream, but not constantly, not without end. Yeah!! I also made the turkey again this year adn it was delicious, though not spicy like we want it to be. I think next year we'll cook a habenero in some white wine and then add that to the wine and lemon and salt and blackened seasoning I inject into the bird to get the heat all over, not just in the rub. Yummy!

December has come with ordering a new couch and two recliners for the new house, a fitting for new DAFO's for Lucas (foot braces), a vomitting seizure, installing an island in the kitchen, getting a new dishwasher and cooktop, having some gas and electric run in the new house and a quick visit from my brother Gabe and his girlfriend Sarah who live in Chicago.

We also had another appointment with Dr. Altman. It took a while to see him again because we had to wait for Lucas' records to be transferred and allow Dr. Altman the time to go through them. (He's got a pretty extensive file for such a young guy.) We have been weening him off the Felbatol and should be finished with that in the next week and a half. We started him on the ONFI (clobazam). He's been on it less than a week and we have more increasing to do. Nothing major to report there, yet. Also, we spoke again with Dr. R from the epilepsy center at Children's hospital. We were supposed to have an appointment with her, but I cancelled it because we were still in a state of transition. It was before we saw Dr. Altman again. She said that she has been in touch with a couple of research groups about Lucas. We are persuing one, in the Northwest. It's Dr. Dobyns' group. He is pretty much the top guy in brain-formed-weird stuff. A Dr. Hannah Tully is the one in his group who is going to be looking at Lucas. We will be sending a blood sample and his brain imaging to her. It is unlikely that anything will change in Lucas' treatment, but if they come up with something that might offer answers to another family in the future, we would be delighted. One thing that she suggested was that some of his brain malformations may be due to his hydrocephalus. Some things like the peninsula that he has in the middle of his brain may be due to the pressure of the fluid pushing the brain matter into that position. Dr. R also had Dr. Bob McKinstry, the top neuroradiologist at Children's hospital, look at Lucas' MRI. He was not around for Lucas' first analysis when the Drs were so confused and uncertain what to tell us. I don't know that we have anything new to share, but we are looking forward to continuing in relationship with both Dr R and Dr. Tully.

One last bit of fun news. Lucas was just in the Ackerman School winter production of the Return of the Grinch. It was amazing. Everyone did an amazing job. All the kids participated and Lucas was fantastic, He was The Honorable Lucas VonWho, Mayor of Whoville. We video taped the whole show and have watched it twice already. We will be putting at least some of it on youtube. I'll let you know when that happens, without such a long blah blah blah. :)

I have gone on for ages now. All I have left to say is Merry Christmas and happy new year. This year has been filled with lots of struggles for lots of people. I pray that as we face what is to come, we face it with a grateful heart and knowing and trusting God, no matter what. I thank God for all of you, for my beloved husband, our amazing children and the grace and faithfulness and love of God, His freedom in and through our lives and His desire that we know Him and have rest adn peace in Him, always.

Our new house

Fall 2012

Special Olympics Soccer 2012

Pumpkin Patch 2012

Special Olympics Volleyball 2012

I'm so not good at this...

Months later, once again, I finally get around to this. Thanks to all who still care to check in on us. I know that I leave a lot out only getting updates to you every few months. Hopefully, some of the pictures will fill in some blanks.

Let's see... Where to begin...

We are now up to 7mL twice a day on the Keppra. The goal dose is 8mL twice a day. We stayed at 6mL in the morning and 7mL at night for a while. At 6mL twice a day, I was feeling confident about improving seizure activity, but when we increased his evening dose to 7mL, he started having more seizures, more clusters and getting more Klonopin. It wasn't as bad as a few months back with numbers over 100, but we had gotten down to between 15-25 sz most days and we were hopping up to 50's or more with clusters of 10-30. I finally increased his morning dose to 7mL also and after a few days, it seems the numbers are dropping again, thank God! He has been more sleepy and irritable, but we are hoping that his body will acclimate and that will subside.

We will be seeing his new neurologist in about a month. Dr. Rohrbaugh is one of the doctors in the same practice as Dr. Burris, who we love so much and will miss for sure. I am hopeful and confident that he will be great for Lucas and for us. He has the same philosophies as Dr. Burris and we are looking forward to getting to know him better. We will still follow up with Dr. R at Children's Hospital, but not as often. We will just keep her as a consulting doc.

In more personal matters, we have recently made some new friends. :) One of the many malformations of Lucas' fascinating brain is called polymicrogyria (PMG). It is the likely culprit behind his seizures. Thanks to social networking, we have met some other families in the St. Louis area with a child who also has PMG. We all met up at a park a few weeks ago. It was wonderful. I always thank God for those special times when I meet new people who feel immediately like dear old friends. I would (and likely will still for a while) forget some names and mix up who is married to who and whose kids those might be, but being together, meeting for the first time, was like we'd done it before a thousand times. All our kids are different and we all have other kids who are "normally developed", but it was like, even though our paths have not been the same, that we have been walking together all along. We are excitedly thankful that we now will be sharing our walks together. We live a bit all over, but we will be getting together many more times. :)

Lucas and Eliana have also both had birthdays. He is now the big 5 and she is 2. He is around the 30% for his weight, but the 86% for his height. We are super thankful for his thinness though. If he were a stocky boy, I'm sure he'd have at least 15 more pounds on him. :) We visited family in NY for his birthday and got to meet our newest family addition, Baby Darla. She was born just less than two weeks before Lucas' birthday and she's beautiful. Lucas and Eliana each spent a day sick on our short visit, so we didn't get as much time with her as we would have liked, but we are looking forward to seeing more of her in a few months. :)

Lucas also had his last day of preschool and will be starting kindergarten the 13th of August. I remain to be about equally thrilled and nervous. I'm sure he will be fine. Actually, I'm confident he will thrive, but I am going to miss him and I have a lot of things racing through my mind I want settled before I really trust him to be in someone else' care for so long. I'm sure I've mentioned before that this will be the longest separation aside from when Eliana was born. He'll be there 9-3:30. I'm sure I'll cry. His last day of preschool was filled with tears for me too. We are eternally thankful for his most amazing team in preschool. We will miss them a ton, Julie, Susan, Sue, Rekha, Linda, Laura and Laura.

We have a bunch of photos for your viewing pleasure. There are a few more on the camera. We'll get those to you eventually. We also still have videos, mostly of Eliana being adorable and often ridiculous. I know I keep saying that.

For now, it's time to get the kids ready to go to the dentist (yeah! fun!). I hope you all have a wonderful day and see the wonder and love of God all around you. :)

Until next time...

Spring in St. Louis

NYC May 2012

June 2012

MRI down and a few pics

Hello again, Friends. Not too much to say today. (Not that I couldn't babble on, as anyone who knows me can attest.) I just wanted to let you know that we had Lucas' MRI this past Friday (nearly a week ago now). My dad came to help with Eliana so that both Marc and I could be with him in recovery. Everything went smoothly as far as the procedure goes. He did have 100+ seizures that day though. We had to wake him to get to the hospital and then had to wake him again in recovery to prove to the staff that he was all right. Any time his sleep is disturbed the seizure count goes up. Also, after about three months of trying to get him pooping regularly and finally having success, we are back to Miralax and have only had two poop days since Friday. He's not had the best week at school either. He's been somewhat grumpy, uninterested and very sleepy. We're not sure why this is, but we'll keep pressing on and expect next week to be better. :)

 As for the results of the MRI, the neuroradiologists at StL Children's hospital are saying pretty much the exact same things they said after his last MRI when he was three months old. They are saying that he has holoprosencephaly (HPE). The last time we went through this, those of you who have been following this mess for the past five years might remember, we sent a copy of his MRI to The Carter's Center- a group based at Stanford in California that works only with HPE cases. They told us that Lucas does NOT in fact have HPE. They gave us a list of different malformations they could see, but said that it is not HPE. The language they are using in this report is the same as that which they used on the last one stating that it is within the "spectrum" of HPE suggesting they are not firm on the diagnosis. The new Neurologist, Dr. R (who has yet to convince me that she's the doc for us), said that she will speak with those in radiology to see how confident they are in what they wrote. Regardless of what they say, we are going to see if those at the Carter Center will take another look and offer their opinions. We have a great deal of confidence in what they say, not only because they are experts in the field, but also because they are experts in the field of neurology in general, the guys who write the books. :) None of this changes our course of treatment for Lucas, so overall, I guess it doesn't really matter. We are continuing to increase the Keppra. Over all, it seems we are having a decrease as most days are about 20-30 seizures. We are looking forward to getting and keeping them down further. :)

I feel like I had something else to say, but Eliana just threw her yogurt soaked bibs on the floor, so I should get and clean up the mess. We have a few pictures to share and hope you enjoy them. Oh! I remember what I was going to say! We are buying a house! Last summer the kids and I went swimming with a friend at the house of a man who attends the same church as we do. I only went into the basement to change a diaper, but told Les, the owner, that we have been looking for a ranch like his with a pool and if he ever wanted to sell to let us know. Six months later, the house was up for sale. We close on it on August first! There are a lot of changes and updates that we want to make, some for Lucas, like changing carpet to hardwood and some our cosmetic preferences like getting rid of all the wallpaper. :) We won't be moving in to the house for a few months after we buy, but we will be using the (heated) pool into the early fall! We are growing in excitement with each passing day and will surely show some pics as we progress. :) I think that's it for now. Blessings to you all. Thanks again for sticking with us. God is good even in the struggle and exhaustion and pain. He Is Good. :) Love to you all!

Spring in St. Louis

A little more sane today

Though not much right this instant as I am battling Eliana for the computer. :) I just wanted to say thank you for reading the rants of a(n occasional) lunatic. I haven't got time now to elaborate on anything, all the better perhaps, but wanted to let you all know that Lucas' MRI has been rescheduled to April 26th. It is a day Marc can attend with us and Lucas will not have to miss school. :) Thanks for all your offers and encouraging words, though I admit I have not read them all, but Marc conveyed some to me. Michelle- You are a darling! Thank you for your offer. I will not need the help Monday, but I will say that it has been too long since we've hung out. How silly that sedating my son would be the only worthwhile excuse to do it. We should remedy that- outside a hospital. :)

Off to baths and dinner and laundry and life, but leaving you with some more photos! There are more on the camera and a video or two, but Eliana is now screaming, so those will have to wait! :)
Blessings!

Oh! Also, Lucas is probably near 200 seizures again today. He was unfortunately awakened just after Five this morning by the flush of a toilet. When his sleep is off, we never know what we'll get, but typically expect more. He's been in great spirits though! He is an amazing child. Joy never ceases to swell within me when I am near him. :)

Enjoy the photos, I hope!

September 11 Memorial

Christmas 2011

What if we were all telepathic?

It might be a bit disastrous, as I am sure we all think things we would never say, but somethings must be easier too, right?

I didn't realize until just now that I didn't update the blog after Lucas' IEP. I guess I just assumed everyone could read my thoughts and know that it went well and he will be attending the school for which we were hoping! He will finish his regular preschool year next month, have a two week break and then return for the month of June for summer school. He begins official full-day kindergarten in August. I can hardly believe it. You may find it hard to believe that the length of a full school day will be the longest amount of time that I will have ever been apart from him except when Eliana was born, which only counts if you include the over night hours he was sleeping. ;) I love to be with him and am sure I will miss him terribly. That is months from now though, so I won't linger on that point (until August anyway!).

I have had a bit of an emotionally rough time the past few weeks. I guess really only the past two weeks, but it's been a greater struggle as I was up with one or both kids for several nights about two months ago, but never caught up on my sleep (imagine that!) and have been battling my body since with pain that it is determined to have me and I am determined to not have. (I am not winning this one, not yet anyway.) Blah blah blah... The rough emotions spilling over my loosened safety net of "I must carry on" began Tuesday before last in the Schnucks (local supermarket) parking lot as I was about to venture into the store with both kids. I got a call back from the nurse in Dr. Burris' office informing me that Dr. Burris didn't want to increase the Keppra before Lucas was seen by the consulting neurologist and that we should not only consider our upcoming appointment with Dr. R as a consult, but also as an interview because Dr. Burris (who I love!) is leaving the practice to move to Texas and teach at Baylor Med School. While I am delighted for him and always trust that God will take care of Lucas (as He has proved time and time again), I am also quite brokenhearted and could not stop myself from crying not only in my car, but as I walked into the store, and at least once in the store. I have cried more since then to think of it.

Our appointment last Monday with Dr. R was fine. She is kind and knowledgeable. She suggested we continue to increase the Keppra, as Dr. Burris would have also. She also recommended that we get a new MRI as there can be greater development after the age of two. I don't know how this would help us, but it will interesting. She also has connections with two different research groups specifically focused on brain malformations. Sending Lucas' information to one or both groups wouldn't really effect us. They may or may not contact us with any findings. They may not have anything worth reporting for 25 years, if ever. We still like the idea of contributing to the research though. I expressed concerns/desires about Lucas' neuro care saying that topping my list is having a doctor who we feel is "here" for us. I don't want to call looking for our doc and get whoever is on call, someone who doesn't know our boy, someone I don't trust. We all too recently were given advice by one of Dr. Burris' partners while he was out of town (the only time he doesn't take his own calls) and the partner's advice sent Lucas into clusters of 100+ seizures. I do NOT want to have this scenario repeated, ever. Dr. R said that she takes all her own calls M-F business hours. She may not call back until 9pm, but she will call same day. After business hours and on weekends, we would get whoever is on call. This isn't ideal, but it's certainly better than I expected. She suggested the use of a new website another family she knows created to track and graph seizures too. There is also an app for the iphone.

When we came home Monday afternoon, Marc felt great about Dr. R and was super pumped about the website/app. I was a bit apprehensive about the former and severely about the latter. I am a pencil and paper gal. Looking at the inter-webs is not my fancy. Trying this new app and website is causing me uber stress. Marc doesn't get that I don't get it. I'm not an idiot, my brain just isn't wired that way. I know I'm the minority, that my grandma in her 80s might be more net-savvy than me, but that doesn't bother me. I can see it on paper. I don't see it on a screen... So this is a work in (very little) progress. I tried calling Dr. R Tuesday and got a menu with no likable options, but left a message on a machine somewhere in the neuro dept. Tried again Wednesday and managed a person, who said she'd pass a long a message. Thursday, before I had opportunity to call, I got a call to schedule the MRI and asked that woman if she could get a message to Dr. R. I finally got a call back late the afternoon. Really building my confidence here. :( Meanwhile, I am trying the app that makes no sense, Lucas is having I don't know how many seizures and not napping and crying through about 40% of his waking hours. Eliana is also not getting good naps so she follows me around frequently crying. With the nice weather and open windows, I am surprised my neighbors haven't called the cops for the noise disturbance. :)


I think I should stop rambling. I am tired and feeling the stress a bit more, which is probably obvious. I still have nothing but love and grace for my beloved children, but my house and my dear husband have not been getting near as much as they should. :/ We'll get through it. We always do. :)

For now, my dinner and my daughter and my son are crying out to me and I have certainly rambled on here for far too long. I just have one last thing to add (if you've managed to hold on through the muck of my complaints). Lucas' MRI is scheduled for this coming Monday, April 9th. They will have to sedate him for the procedure to ensure he is still. It takes about an hour in the MRI machine. We will have to arrive at 0645 and the MRI is scheduled for an hour later. We will then have to wait for him to wake and be convincingly stable. I am not certain how long we will be there. We will either need to have Eliana not there or have another adult to help occupy her at certain times. My dad has offered his help, but it looks like it might just be the two of us as Marc may not be coming because of a busy morning at work. Regardless, We would/do always appreciate your prayers.

I have to stop now. Really. Thank you for tolerating such posts as this. I may go back later and change a few things, but maybe not. Love to you all. God is good and His grace is always more than enough. I pray that you know Him and His love and grace, that you rely on Him completely and that you are filled with his peace even if you are surrounded by screaming children and deadlines. :) Blessings, beloveds!

Little Update

Just a quick word to y'all...

I spoke with Lucas' neurologist, Dr. Burris, and we are going to increase the Keppra a bit. He wants to take things pretty slowly and carefully, but thus far, things have been much better than they were three weeks ago. Lucas is averaging 0-5 clusters a day of 2-8 seizures in each and about 20-30 individual seizures. We have an appointment on March 26th at Children's Hospital Epilepsy Center with Dr. R. We'll see what he/she (I'm not sure which) has to say.

In other news, we have Lucas' IEP (individualized education program) meeting this Friday. This is a meeting attended by all his current team, two possible teams for next school year and a bunch of others. There are two possible locations for Lucas next year, one is a regular elementary school with a small separate special ed (SpEd)class and one is an all SpEd school. I recently toured them both with my new and fabulous friend Deborah whose daughter goes to school with Lucas and will also be starting kindergarten in the fall. I had high hopes to love the regular elementary school, but ended up feeling no excitement whatsoever. The all SpEd school was the one that really warmed my heart and it is where we are hoping to send him. I am hoping the decision will be made in the meeting on Friday so that we can go ahead and settle into it. It is based on the amount of time determined that he needs in therapy and on the opinions of his current team and, we've been told, us parentals. I will try to get back on here soon after the meeting to let y'all know the conclusion.

For now, I am off to make lunch and feed the handsomest boy I know. :) Love and blessings and thanks to all of you!

Amazing

Since the last post, we've begun a new med, well, actually, it's an old med. Lucas took this about three and a half years ago. It's called Keppra. We had great success with it until one hectic evening resulted in a missed dose. We had been down to 3 or fewer seizures/day, but the numbers flew up again that next day and we haven't had such consistent success since then. Dr. Burris feels like he is at a bit of a loss. We have been through all the drugs he's comfortable giving Lucas and we don't want to pursue the ketogeninc diet, not at this time anyway. We are, therefore revisiting Keppra and will be having a consulting appointment at the Epilepsy Center at St. Louis Children's Hospital. The appointment is not yet scheduled, but it won't be for at least two to three months. I guess they stay pretty busy.

Since stopping the Vimpat, the seizures have decreased significantly, but they are still far from under control. We just began the Keppra this past Saturday and will increase it again this coming Saturday. Two weeks after that, we will call Dr. Burris to check in. In the meantime, in spite of seizures, Lucas continues to be a beacon of joyful light reminding us of God's love and faithfulness.

Over the course of the past week I have heard the word "amazing" quite a lot. "Esther, you are so amazing." "You and Marc are such amazing parents." "The way you handle everything is amazing." I have known many of you for years and through significant struggles of your own. I know that your adventures might seem to differ from ours, but taking whatever adversity comes your way with love and grace and faith is not amazing. For me, it's like breathing. Apart from Amazing God, I am nothing and am certainly incapable of anything amazing. Because I know His love and rest in His grace and trust His mercy, life, even pain and unknowing, is good. I choose to see the amazing. That doesn't make me amazing, but it does keep me believing that this gift of life is amazing.

We continue to thank God for each of you and His amazing love we feel through you. Thank you for standing with us. I pray that your eyes are opened to see all the amazing around and running through you.
Blessings, friends. I'll try to update again before too long. We will work on getting our Christmas pictures together too for your viewing pleasure. :) I'm going to get back to my little loves now!

No hospital today!

I just spoke with Dr. Burris and he said to give another Klonopin. He is hoping to get us through the next few days on Klonopin only. I guess we are hoping to see the Vimpat get out of his system before we do anything else. If we have another episode of this, we'll just call him again. We'll try to keep you posted. Blessings and thanks for your prayers and love. :)

Please Pray for Lucas

This is a somewhat different post than the last. This is an update of our recent struggles, not victory, though our hope and faith in victory remain unwavering.

January 15th, Lucas had two seizures (sz) like those he had when he first began having seizures. His typical sz presents as his head moves down and toward the left while his right arm moves left like he's going to give himself a hug and his right leg stiffly extends. There are varying degrees of this motion, some more severe in which he smashes his face into things and bruises an eye or bloodies a lip and others much more subtle which without looking directly at him would almost certainly go unnoticed as it is just a momentary movement most obvious in the quick glance of his eyes to the left. The sz he had when this all first began presented in the form of his right hand clenching into a fist repeatedly for minutes typically accompanied by his right foot making a tapping motion. The 15th of last month, this fist clenching sz is what we saw, for the first time in years.

When this all began, we were told that if a sz lasted longer than five minutes, we should take him to the hospital. (His first lasted about 45 minutes and had to be med-force stopped in the ER.) The two that we saw recently did not last that long, but I wanted to make sure we knew what to do if it did go on for at least five minutes. Of course, Lucas' neurologist (who I love!) was out of town for the week and the doctor covering for him advised that we double his Vimpat (the most recent drug he'd begun taking) and called in a script for a new medicine to be given for a long lasting sz.

I don't like to jump into big meds with Lucas, so we began increasing slowly. We didn't see anymore of the fist sz, but his "normal" sz were increasing. Wednesday night, the 25th of January came with sz that seemed they would never stop. He had at least 125 sz over the course of about 30 minutes. These were his "normal" sz, though mostly really small ones. Every time we thought they were stopping, they would start again. We ended up giving him the new med, Diastat, and the sz stopped. He fell asleep and stayed that way all night. In the morning, however, it began again with over 100 sz. I called Dr. Burris at 0630 and he advised that this was resulting from increasing the Vimpat. We have another drug we've given for large numbers/clusters of sz for a long time called Klonopin and he advised that if the sz didn't slow within 30 minutes after giving the klonopin, to give the Diastat again. The sz did slow, so we didn't do the diatstat and we dropped his dose of Vimpat down to way low in hopes that things would improve.

Things did improve. Not super dramatically like our last post, but they were certainly better... until yesterday. He fell asleep right before leaving for church and woke about an hour later, fine, peaceful, happy, and then they began, and wouldn't stop. I gave Klonopin after about 20sz, but they just kept going for over an hour, though they slowed some. I called Dr. Burris again (God bless that man!!) and he advised that we stop the Vimpat all together and give the Klonopin regularly, twice a day. He said that he was trying to keep us from going to the hospital. I told him that we appreciate that.

So, this morning comes with more sz. They have slowed significantly since beginning an hour and a half ago, but they haven't stopped. We decided to wait until office hours begin to call Dr. Burris instead of using the service that tracks him wherever he is, whatever time it may be. I am unsure what he'll advise, but I know that it is leaning toward probable that he will want Lucas admitted for observation. I guess We'll try to let you know today if that is what we do. Regardless, we appreciate your prayers.

I have been thinking a lot recently about the goodness of God and how He is above everything, knowing what is in our hearts, knowing our drives, our longings and how we are only satisfied in Him. My heart aches for my son, for my husband who burns with desire to save his son, for Eliana whose life is so different than others because of days like this. I think of my in-laws who are in NY and feel so helpless, though I am right here holding him and can seem to help no more. All this, believe it or not, inspires hope in me. I thank God for these aching longings because they turn us to God. I know that there are those of you who don't pray and maybe wouldn't ever, if not for your love for Lucas and our family. Maybe you aren't even sure that anyone is listening, but I know that there is Someone listening and I know that He delights to hear you and He aches with longing to satisfy you as nothing and no one else ever could. I wouldn't wish anyone to have to face what we have faced, but I don't consider it a burden, but an honor. Lucas is an inspiration and a source of hope. He turns my face to God so that I can see that God's face, His love, His grace, His mercies, are shining, pouring, washing over me. There is nothing better than knowing that. No matter what, I have peace. No matter what, I have joy. I pray the same for you and thank God for each and every one of you with tears spilling from my eyes. Blessings, beloved friends. It's 0900. Time to call the doctor.