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!

Third Time's the ... What?

I guess I seemed a bit overwhelmed in my last post. I got a lot of feedback about people's experiences with the arrival of baby number 3 throwing the balance. I think I have heard this about the second and the fourth too. After four, I hear it's all a blur. I don't know that I am super overwhelmed with three kids. We've had a rougher start than I would have preferred and it is true that I am not part octopus and still have only two arms with two hands at the end of them. I find myself reminding the children of this by asking, "How many children does Mommy have?" Sometimes the answer is three, sometimes four as Marc gets included in that count on occasion based on his behavior. :) I did ask this question when there were only two (or three with Marc) also. I am one of six children, (seven including my sister who didn't grow up in our house), and I don't know how my parents did it. My guess is that they don't either.

I love being a mom though. It's something that I have longed for since I was a young child. I remember being four years old and confidently thinking that I wanted to have seven children, a combination of my blood and adopted. I don't know why seven. I only had one or two little brothers at the time. Little brothers three and four were not even on the horizon. Seven was the number though. I held on to that number into adulthood. After such a rough (sick) pregnancy with Evangeline and then the crazy sleepless labor and delivery, my OB said to us (it took a lot of research and conversation to convince him to let me try for the natural route vs a repeat c-section) that now that I have done it this way (naturally), I can have seven more the same way. There was that seven again. This time, however, I thought, "I think I'm good." I do still like the idea of adopting, but we aren't at that point yet either. For now, learning how to be a two armed octopus with a complete skeleton is enough. :)

I'm glad to report that Lucas is doing much, much better. He started turning last Wednesday night/Thursday morning. He got up that morning at a reasonable hour and ate breakfast. It was the first day in three weeks he had done so. I don't know what changed though the prayers of so many faithful friends I am certain had something to do with it. We began treating him for a urinary tract infection (UTI) because his urine culture grew E. coli, but his urinalysis was fine, so he likely did not have a UTI, but the sample I collected was contaminated. It happens a lot. His blood work was also negative for both cytomegalovirus (CMV) and Epstien-Barr virus (EBV), the two primary culprits behind mononucleosis (mono). We took him to the ophthalmologist for his yearly exam and Dr. Lueder said that there were no signs of pressure to suggest a shunt malfunction (and that his astigmatism has returned in the right eye and is now present in the left eye as they are working to balance their abilities apparently), but we made an appointment with the neurosurgeon's office anyway to check his shunt. It's fine. I didn't think that there was a UTI or a shunt malfunction, but it's good to cover the bases when we don't know what's happening. I thought it was mono and it wasn't so... My bottom line with Lucas remains about the same: I don't know. He is a fascinating case, our sweet moose. :)

Thankfully, whatever had been afflicting him seems to be at bay. His seizure activity has dropped back off and has been even lower in number than it was before getting sick. The severity has remained higher and he has continued to demonstrate some new seizure presentations, but overall, he is back to Lucas, back to smiling and snuggling and squealing and eating. :) Our amazing boy.

Again, I am sure that there is more to say; there always is. I know that I have left most of you in the dark for a long time about the goings on in the life of Lucas. Now, however, I want to get back to my Saturday morning with my family, a time I savor and hate to miss. Before signing off for I don't know how long, I would like to leave you with this: I was talking and praying with our dear friend Desiree late one night last week while Marc was out of town. (I decided to seize an opportunity I don't have often enough even though it meant a greater lacking in sleep.) I don't remember if it was something she said in conversation or something she prayed, but she mentioned "the joy of the Lord is [my] strength". It hit me hard because it is so true. I am weak. I am tired - all the time. I am brokenhearted to see my son, my beloved son suffering. I am brokenhearted to see my community suffering. (We live in the now world famous Ferguson - and we love it.) I struggle to balance my time. I don't even shower most days. There are countless things that I long to do - keep my house clean and organized, read more with my children, sew, read (for myself), shower, sleep, garden, design toys and clothing and household gadgets beyond the wonderings of my mind, etcetera. Not to mention things like see Lucas walk and run and dance like I've seen in my dreams or hear him talk and sing and see him look at me, holding my gaze from across the room. I long for so much, but in the midst of my longing that seems without measure, I am satisfied because the joy of the Lord IS my strength.

To think of my longings compared to my joys, the scale is tipped so much that as my list of thanks continues, the pain of longing is so far removed from me that I almost cannot see it and I am comforted. I have a house with a roof, walls and secure doors. I have electricity, running water that's clean and even hot if I want it to be, I have toilets that flush - two of them, I have heating and cooling, clothes, blankets, beds, pillows, dishes, Food, and so much more. I have a husband who loves me and our children and our community. I have three amazing children. Yes, my son is not a "typical" boy, but it is impossible to imagine life without him. He is a vessel of joy and peace and comfort in the form of an almost eight year old boy. Ask anyone who has sat with him; he will change your life. Everything is all right when snuggling Lucas. Everything. Looking at the countless blessings in my life, the most obvious in the forms of family and faithful friends, I am convinced again and again of the love of God, the greatest blessing of all. He comforts me, consoles me, encourages me and strengthens me. He fills me with joy and I am not only able to trudge through life, but to savor it for all its wonderful delicioiusness.

It's my prayer that you would have hearts filled with thanksgiving for the good that abounds, that you would be moved to celebrate every raindrop as it is a reminder of the rainbows, even if you never see the rainbows. God is good. Moving into Spring is a perfect time to be blown away by the new life that awaits us if we take hold. Soften your hearts, rejoice in the good even in the midst of the pain.The butterfly couldn't fly if it didn't first endure the long dark and the hard struggle into the light.

Bless you all. I remain forever thankful for you. May the joy of the Lord be your strength as well.I'm off to snuggle my boy now!

If time travel were possible...

I don't know that I'd take advantage of it. I think that we all likely have things we would rather have said or done differently, but then where would we be now? How many other things might have changed by altering one tiny thing? I don't know. Maybe it would be cool. Maybe it would be good even. Maybe there would be more updates on this blog. Then again... Maybe not.

I find myself again at the computer after a severe writing drought. I am certain there are too many things to say in a short amount of time as there is no guarantee how long this baby in my lap will be satisfied with her toy, and I'm likely to forget a bunch of stuff too. I am mostly driven to write now because Lucas is having a rough time and my mom encouraged me to share the news and get others on board to pray for him. This seems to be the most efficient way to do that.

This whole school year has been a bit off, I think. He began ok with a new teacher this year (who is wonderful and we love her and her team!!), but I think that having Evangeline has taken a huge toll on me and that has affected everything else. To sum up: After four sleepless nights of labor, she came in a bit of a whirlwind, all naturally after the other two were c-sections. I was beyond exhausted and haven't had much rest since. She had some feeding issues and I had be up most hours in the day to keep on a very regimented feeding schedule. She finally made it back to her birth weight at 6 weeks old (normal is by 2 weeks old). It did take me away from my family and even my own sanity quite a bit though. One (myself being that one) would think that with a third child things would be simple, clear, predictable, manageable, but no. Not in this case. My other two kids had no issues with eating. I didn't have to attempt to force feed anything. They didn't have to have the underside of their tongues lasered. Blah blah blah. She's doing great now, but I am still on the cusp of myself, just beginning to crawl out of the hole. Evangeline will be 6 months old on Friday. I never would have guessed it would be such a recovery. My sweet family, my sweet boy, they have been rather neglected I think.

I don't know how much that weighs in, but I am sure it accounts for something.

Anyway... More recently, Lucas got sick. He had a lot more seizures than normal at school then came home and vomited. Eliana had just been sick two days earlier, so I thought it could be related, but she didn't have a fever. Lucas did.I didn't actually see him vomit. I was bouncing a fussy baby and didn't hear him either. It is entirely possible that he vomited due to having a seizure. (That has happened several times.) Anyway, he ended up a mostly lethargic boy for about a week with temperatures ranging from 99-almost 104. When I brought him to see the pediatrician, he had already been sick 5 days. She gave him some antibiotics in hopes that it was just a bad bacterial infection in his adenoid gland which was swollen so that it looked like he might be harboring a tennis ball in his throat. After 3 days on the antibiotics, the fever was gone and he looked more like he had a ping pong ball in there. He was also staying awake more and acting much more like himself when awake.

Even though he was still sleeping a ton, we started sending him to school again.We sent him all last week. He finished the antibiotics Thursday. I know that they continue working for a while after the Rx is completed, so I wasn't super concerned that he wasn't entirely improved, but as he has continued to sleep around 20 hours a day, I called the doctor's office again. She ordered some blood work and a urinalysis. I am confident that he does not have a urinary tract infection (UTI), but understand the need to rule it out. She wants to check his basic blood panel and also to see if he might have some viral infection such as (this is the number one theory, I think) mono. We won't have the results for a few days, maybe not until early next week, but hopefully the answer will be there.

After we get those results, our next call is very well going to be to the neurologist. As Lucas came out of total lethargy, his seizures have been weird and not good. Being sick can increase/alter seizure activity, so I want to know about the sick first. He has demonstrated in the past 2 weeks at least three new seizure presentations atypical from his norm. He had already begun to have some grand mal seizures with generalized body jerking like most people imagine seizures to appear, but that he has never had before the past 3 months. Now, he is doing all kinds of funky things including seizing in his sleep which hasn't been an issue in the past. (He has them frequently as he is waking or sometimes as he is falling asleep, but not while he is asleep in the night.)

I am tempted to call Dr Altman now (the neurologist), but know that there isn't much to do until we get him healthy. We just increased his medications about 2 months ago since his seizures have increased in severity. I don't know that what is happening with his seizures now is due to his illness (whatever it is) or if it is something else, so we will wait it out a little longer and hopefully have some answers soon.

I need to get to Eliana's school now. My boy is still asleep after his 40+ seizures so far today (a normal day total is less than 30, usually less than 20) and my baby is screaming and especially grumpy and I hope not sick. Thank you all for praying I will try to update when I get his blood work results.

My apologies for the rough writing and likely typos. It's not easy typing mostly one-handed with a fussy baby! Thanks for loving me through it! :)

Blessings.