Let me 'splain. No; is too much. Let me sum up.

It's been two years since I've gotten around to this. A lot can happen in a couple years.  I'm sure I'll miss plenty of stuff, but here's something out there for those of you interested.

I'm currently sitting in a smallish room at Mercy Hospital in St Louis awaiting my dear Lucas' return to consciousness after anesthesia. He had some dental work- x-rays, a cleaning, some sealant applied and a little filling in a tooth with a deep crevice (not a cavity). He also had his first round of botox injections. That's interesting, right? He isn't going to look any younger (he's actually working on a moustache and looking older all the time!), but will, hopefully, have less swing of his hips to the right. He has a good deal of increased tension in some of his muscles which causes them to pull his body in certain directions. We have been watching his left hip for a few years now because it is slightly pulled out of the socket. If it were to suddenly dislodge, it could be excruciatingly painful and warrant emergency surgery. The botox should help decrease the risk. It only lasts 3-6 months, so if it is successful, great, but... we could be in for several more of these anesthesia-requiring appointments.

We are considering having a vagus nerve stimulator placed to help with seizure (sz) control. It is a small device, similar to a pacemaker, that is implanted in the upper chest and has a wire that wraps around the vagus nerve in the neck. It sends an electrical charge to the nerve at set times every day like a medication. There is also a powerful magnet that can be used to trigger the electric impulse when he is having a sz, to help cut it short. It is remarkably successful in about 1/3 of patients, successful in about 1/3 and minimally successful to making no apparent difference in about 1/3. It's benefits typically continue to increase over the first year and then level off. Most folks who have one are able to significantly decrease medications. The thought of that is wonderful to us. Lucas is in the throws of puberty, so I understand the desire to sleep a lot, but I have no doubt that being on multiple medications which cause drowsiness plays a role too. There are some risks and side effects that need to be weighed, so we are still in researching mode. Lucas' inability to explain to us what he experiences or understand exactly what's happening to him causes a bit more concern and desire for even more information, especially personal testimonials from folks who can tell what they have experienced.

I'll now attempt to give a brief-ish summation of the last two years, likely in jumbled order and surely neglecting several things.

He had his tonsils and adenoids removed in September 2016 to diminish his "severe obstructive sleep apnea". In his initial sleep study, he averaged around 400 sleep disturbances an hour. In almost 9 hours of sleep, he only had 2 1/2 minutes of REM sleep and his oxygen levels dropped significantly multiple times. That's not at all good. His post-op sleep study showed that he is so greatly improved, he doesn't even need a CPAP machine! (Marc, however, will be getting one soon!) The ENT was so pleased that he released Lucas from his care. Unfortunately, at the end of May 2017 and again in September 2017, his right eardrum ruptured. I bought an otoscope and caught another ear infection about a month ago before it got that bad. We will see the ENT again in a couple of months to discuss having tubes put in his ears. If there are 6 ear infections in a 12 month period, tubes are the recommended treatment. If there are 4-5, it's also often done. He has also had recurrent UTIs, over the past couple of years. His pediatrician can handle that though.

May of 2016, my dad died unexpectedly. There is much that can be said about that, but I don't know that I'm up for it. I also don't think that a blog about Lucas is the place for me to expound upon my grief. It has been a great dissuasion to my posting here. For that, I'm sorry. The funeral was on Lucas' 9th birthday. I just couldn't get past that to say anything else. Lucas loved his Grandpa Beard and Grandpa Beard loved Lucas. He is greatly missed. If anyone wants to see his obit, you can read it here.

Lucas is still having daily sz, but most days it's 15-20. They have decreased some since adding Trileptal to his med regime and since having his tonsil/adenoidectomy (improving his quality of sleep). We've had a few times over the past few months that the sz wouldn't stop coming and we had to give rescue meds to try to stop them. They still often send him off to sleep. He still gets occasional surges of chemicals flooding his brain and causing him to smile/laugh, cry miserably, or rage like the Hulk too. He also still has plenty that are quite "small" and only noticeable if paying close attention.  We still pray that he will be healed every day. We still are seeking how we can help decrease them. We are still thankful that we are not having days of 100 or more sz.

We started having an aide come to the house four days a week to bathe and hang out with Lucas November 2015. We've been through over a dozen people and we are on our third agency. We've had a few real gems over the last year and 3ish months. Stuff comes up in people's lives that needs to take priority over the 12 hours a week we have a need. I'm hoping to get set up with some funding for extra aide hours before the summer begins so that we can have someone with us for the school free days to get in and out of the pool and go... wherever. I started the process in April, was told in July it would be four weeks, but here we are, 6 months later and still no answers. I'm grateful for the funding, but, oy vey, the process!! We are grateful to have Lucas bathing more often and having some attention paid him while I make dinner and go through backpacks and what not. I hate hime being ignored because I have to do other stuff. I'm hoping we'll have an aide who sticks around for a while again. Training a new person every day or week or month is not my favorite, but I understand; it's a process that shouldn't be forced. We want the right person and we want everyone to have their priorities in order. For now, we've got someone who is doing all right, has been with us for about three weeks, and seems to intend to continue.

I've been battling some chronic bronchitis since summer 2016. I'm hoping that beginning allergy shots this year (a five year commitment!) will help. Currently, I'm taking the strongest inhaler on the market (or so I've been told), Singulair, Allegra, and a med for acid reflux. (Apparently, acid reflux can cause respiratory issues, even if there are no typical symptoms of acid reflux.) I also have another inhaler for when I'm really struggling and have done multiple rounds of both antibiotics and oral steroids. I've been sick more than I've been well, and even when I am well, I still have a slightly productive cough, though it isn't constant or quite as bothersome. I had some allergy testing done and I tested positive for almost everything. The running theory is that I got so sick for so long summer into fall 2016 that my lungs have not been able to recover, and my fierce allergies are not helping. I'm pressing on. God is good and faithful and I always find strength in Him even when I feel like I won't be able to find it again. I'm hoping to get better and stay better this year. I want to feel up for doing things, not feel so tired and defeated. I want to have fun with my kids, have more date nights with my husband, and maybe even drop in on an adult tap class or two at Eliana's school. (Yes, they have adult classes too!)

Lucas is now ten years and seven months old (well, almost - as of the 14th). He's about 5'2" and somewhere around 100 pounds. His voice is getting deeper and the hair just keeps growing. I'll likely be purchasing an electric razor in the next few months. He is in the 5th grade. He's still as sweet as ever and his snuggles are still the best. He is still my favoritest favorite favorite. He might have a crush on Elsa from Disney World. He was certainly enamored when we were there in August 2017. (She was amazing!! There are so many folks who don't know what to do with a kid like Lucas, but she was wonderful. She got down on his level and talked just to him. She took the time and engaged with him. He certainly noticed too! He was all smiles, in that dopey "Aw, shucks!" kind of way. The woman who played Tiana was great too and left him with kissy lip marks on his cheek!)

We've been to New York, St. Croix, and Walt Disney World. Marc and I got away to Kentucky for a couple of days and went to a caregivers of special needs kids retreat for one night. We mostly stay super busy. Lucas is still doing the hippo therapy (horseback riding), and Eliana has started getting riding lessons too. I am still homeschooling Eliana two days a week and she is in a regular class two days. Fridays are her "enrichment" days. This year, she's taking Musical Theater (and will be in the spring musical "Beauty and the Beast"), Spanish, Art and Circus. Evangeline will begin joining her on Friday mornings for a Creative Movement class. She is super excited about that! I'm working with the  Kulture, a ministry for the youth in our community that meets at our church every Tuesday evening, and I LOVE IT!! Being a teenager is tricky. I'm so thankful God is using me here, speaking truth and overcoming the junk in my past by loving others and (hopefully) convincing them to do it better than I did. Marc is an elder and one of the leaders of the men's bible study in addition to doing all kinds of other stuff. We have a small group that meets at our house every other week to read the bible, talk about it, pray for each other, and eat - not necessarily in that order. Generally, we stay pretty busy, but it's usually good stuff- when it isn't doctor appointments because something is wrong. I don't know when I'll update again. Sitting at the computer just isn't my bag. I'm sure there are a gazillion things I'm forgetting, but this will have to do for now, until God only knows when. I'll leave some pictures below. I don't think any of these have been posted yet. If they have, skip them or enjoy again! I am including an album of my dad too, if anyone is interested, but be warned: there are like 400 pictures there.

As always, we are grateful for your prayers. We know that without God, we would not have much hope, but with Him, we do have hope, and great joy even in the face of countless unwelcome things. We pray for you too, that you know the Hope we have, that you seek God, that you research Him, find a bible and read it, check out some Tim Keller, Ravi Zacharias, Craig Keener,  or Lee Strobel. It's on my list of to-dos for this year too.

Blessings and love!

2015

drive and disney 2015

More disney 2015

my dad

2016

some 2017