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.
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| Our new house |
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| Fall 2012 |
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| Special Olympics Soccer 2012 |
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| Pumpkin Patch 2012 |
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| Special Olympics Volleyball 2012 |
