I'd like to be better

A few months back, I was asked to share at church about God being good in the midst of the "bad". I think that it is easy to look at challenging circumstances and label them "bad". Lots of folks, I think, like to blame God, be angry or add to the list of reasons for disbelief because there is so much "bad". For me, recognizing the "bad" leads me more passionately to The Good. I've heard plenty of folks talk about how "God won't give you more than you can handle", but that isn't what God says. He says He will give us more than we can handle, especially when we are trying to handle everything on our own. We aren't supposed to be able to "handle" everything. We are supposed to turn to Him. We are supposed to rely on Him. He wants to help us. He's waiting for us to ask. In the hard, in the broken, in the pain, in the unknowing, that is where He is waiting for us, yearning for us and He uses these things to drive us to Him. This isn't to say that He doesn't want good and joy and and wholeness and peace and "good" for us, quite the contrary. If, however, we have such "good", it is exponentially better for having had the "bad". Diving headlong into Him, in the midst of the "bad", I find peace and joy and wholeness and "good". If that can be found, so beautifully, in the midst of the struggle, how much more in the midst of ease! Anyway... Thinking about what I might share at church, I decided to look back over the blog posts that I've written through the years. I read about when the seizures began, the frustrations of cancelled eye surgery (which still irks me), growth spurts, vacations, accomplishments, equipment, and lots and lots of doctor appointments. Aside from being further encouraged, I also realized how much more information I used to give. In light of my grateful heart, a desire to inform and the hope of having more time to apply myself to such things as blog posts and sewing and house keeping with the school year about to begin, I offer a few tidbits of the life of Lucas as of late.....

His seizures (sz) continue to evolve. He is having more and more of the tonic-clonic (grand mal) type seizures and both these and the more (what we've come to consider) typical sz presentation in which he drops his head and stiffens and frequently ceases/struggles to breath have grown in intensity. He is still not having them in large numbers (still less than 30/day), but almost each one will wipe him out and he sleeps after having one. He, unfortunately, misses a lot of potential fun and food due to this.

The state of Missouri last year passed a bill legalizing CBD oil (derived from marijuana, low in THC-what gives the "high") for individuals with intractable sz. There are a lot of hoops and frivolous things written into the bill as well as a few things that probably should have been written into it. There are many complications, misconceptions and, well, frustrations because of this. The product must be grown, processed and distributed only in Missouri. Individuals do not need a prescription to get the CBD oil, but they do need to have a licensed neurologist sign off, saying that there have been at least three unsuccessful treatments tried. (We will be working hand in hand with a doc though. We have no interest in experimenting on our own in such an unknown area, especially with Lucas, whose sz can be so unpredictable.) This paperwork is then mailed to an office somewhere to be evaluated and, if approved, a registration card is then issued. Due to much of the confusion in the law, some concerns about litigation and the lack of clinical trials as of yet, most area physicians have been told that they are not allowed to sign the required paperwork. As of a few months back, only 7, yes SEVEN, individuals had received registration cards. We have two different neurologists, at two different top-notch hospitals, but neither is allowed to sign off, so.... We have a new doctor for Lucas!

We saw Dr. Goretzke at Cardinal Glennon hospital June 22. He reviewed Lucas' records and said he is an obvious candidate. There are two facilities locally. One says that it should have product available by the end of the year. The other says that it should have it early in 2016. We don't know if it will offer any benefits for Lucas or not. Most of the news out there about it is sensationalized on a few extreme cases. The masses who try it without success are not nearly as interesting. Also, explosive diarrhea may or may not be one of the side effects. No one wants to talk about that either. :) We plan to continue seeing Dr G as long as we are on this course of treatment. If, however, we do not have great results, we will likely bid him adieu (with tremendous gratitude) and return to Dr. Altman (who we really like and miss, but is not able to walk this with us). While we await the CBD, we decided to try an increase in one of the meds Lucas takes, Onfi (clobazam). It does't seem to have offered much (if any) measurable benefit, so I think that we are going to drop him back down to where he was, but we may end up adding Depakote to his medication regimen. He took it before, when I was pregnant with Eliana. It made me so sick. I couldn't even think of giving it to him without vomiting. I think I'll be able to handle it now though. :)

Yesterday, Lucas had his evaluation/first session of hippo therapy! (mildly disappointing to discover it is horse, not hippopotamus) He will ride a horse every week while working with an occupational therapist (OT) and being escorted by another therapist and a few volunteers. They will focus on his posture, holding his head in a proper position and reaching his hands and arms out to hold the reins (someone else holds the reins that actually lead the horse). Simply being on the beautiful animal should help to strengthen his core and legs and should benefit him in just about every area. He did ride rather slouchingly, but he did not complain at all! I think he liked it, but was not quite sure what to think of it. The supervising therapist, Holly, has already given me some great insights, ideas and assignments to help Lucas along. I don't yet have any pictures of this. He was only on the horse for about 10-15 minutes yesterday and the camera with his wheelchair beyond where I was allowed with a five year old and a baby. Eliana, at the end of the session, was invited to visit the stable and meet and pet a few of the horses. She was delighted. In future visits, she will likely get to hop on a horse herself at the end of a session.

I'm sure there is more I could say now, but I need to get to other things. Lucas will be a third grader this year and will be in a new classroom with a whole new team. The only person who will be retained is his vision therapist (who is wonderful!). We will miss his former crew, but will see them around and are looking forward to the coming year with great hope. Eliana begins kindergarten and will be attending a university styled school. It is called DaySpring School of the Arts. She will have core curriculum classes two days a week at their facility and two days a week she will be home with me as her teacher working on the assignments given by her classroom teacher. On Fridays, She will be back in school, but taking Art, Music, Magic School Bus Science and Theater classes. We are all excited about this and I'm looking forward to sharing more with y'all about both of their education experiences this year. It is much more likely that I will get to doing it too because I will have three days a week with only one child!! I not only plan to post more, but to conquer projects that have been long awaiting my attention all over the house and out and about too!

For now, I'm off. I'll try to link to more pictures soon, we have several more than what's below, but I hope these will tide you over for a while! (Crazy that Evangeline will be a year old in less than a month and I am just now putting up her birth pics! God bless you patient people! :)

Disney Trip 2015

Disney Memory Maker

Grandpa Mario

Evangeline DeSantis

Blessings and love all you dears!