Thursday, May 17, 2018

Another Procedure, Another Update

My life, in general, is not conducive to writing. It provides loads of material worth documentation, but not the time to sit and put pen to paper, or fingers to key board, or even sitting much at all actually. When Lucas is in the hospital for some procedure, however, I find myself with an opportunity I feel I should take. I'm hoping to catch up on some other things too.

We are back in the Same Day Surgery Center at St Louis Children's Hospital. Lucas is having a vagus nerve stimulator (VNS) placed. It is a small device, similar to a pacemaker, implanted in his chest, near his left shoulder. There is also a wire that coils around the vagus nerve in the left side of his neck. The VNS will send an electrical impulse through the coiled wire to the nerve for 30 seconds at intervals of every five minutes around the clock. The strength of the charge can (and will) be adjusted by his neurologist. It will be gradually increased about every two weeks over the course of about four months. There is also an option to trigger a stronger impulse, if he is having a more severe seizure or is clustering. It typically is programmed to last for 60 seconds, but we will sort all the details of dosages with the neurologist.  Most people who have a VNS have growing success. Unlike medications that decrease in efficacy over time, requiring increasing dosages, the VNS increases in efficacy. It is also one of the more recommended treatments for individuals with Lucas' seizure diagnosis of Lennox-Gastaut Syndrome. We are hopeful to see our handsome moose have a decrease in seizures, a decrease in medications, an increase in alertness, and an increase in abilities. My hopes that he will walk and talk remain. They will always remain.

Lucas turned 11 on Monday. He's so big. He was 95 pounds when we weighed him this morning. He's tall and handsome and hairy and a little pimply. Ahh... Puberty! I have yet to buy a razor. I'm putting it off as long as I can (for the hassle and a good price with good reviews). Soon though, I will have to make that purchase. He's still the sweetest snuggler and I'm hoping that doesn't stop, regardless of size or hair. That's always my favorite part (we've got to look on the bright side, right?) of procedure days - the time to snuggle and sit still and quiet while holding his hands. His last day of fifth grade is next Thursday, but I doubt he'll be returning to school this year. (I was not thinking about that when I scheduled this, but I should have been!) The pressure/position of his chest harness could poorly effect the healing process. I'm not really sure how we're going to manage this because Eliana still has school, and there are other things that require leaving the house and being in a wheelchair. I haven't seen the incision sights yet. I'll be able to make a better judgement call once I do. We don't have the pool open yet, but no swimming for at least three weeks; no hippotherapy (horseback riding) either.
The remainder of the summer I expect to be a delight!

Eliana just performed this past weekend in Beauty and the Beast. She was a village girl, a wolf and a tea cup. She did great. The show, across the board, was great. I was able to help with some hemming/adjustments on costumes before (and some during) the show. I also had the pleasure of helping backstage during rehearsals and some during the performances. I haven't done any live theater anything since high school and was amazed at the memories, but even more the rush of feelings that came back to me. I had a great time and look forward to helping again next year. I was told that the entire show will be posted on youtube. I'm not sure when that will happen, but if you end up seeing it and are trying to find Eliana, just look for the smallest person. She was the absolute smallest person in the show. She will perform "Be Our Guest" with the rest of the cast for the school Finale performance in a couple of weeks too. She's seriously cute and already looking forward to whatever musical they decide to do next year. I think she's caught the theater bug. :) She'll be eight next month and wants to have a petting zoo of all baby animals instead of a pool party this year. She loves creatures of all shapes and sizes and can typically be found outside exploring if the weather permits. She is desperate for a pet and has begun saving money for a dog, though she knows that she will not be getting the dog until she has her own place. I think they're great, but not for me. We told her when she turns ten we'll talk about the possibility of getting a pet, but it has to be something small and super low maintenance, like a gerbil or lizard. We'll see. We have some time to do some research between now and then.

Evangeline (or Bowie, as she most often calls herself) is becoming a "big girl" more and more. She's super smart (like her big sister). She's getting taller, and more adventuresome. She's got an imagination beyond even Eliana. Evangeline doesn't need dolls; she can use crayons, sticks, rocks, candy wrappers, or just about anything she can find to become the characters of her design. She also tells some fantastic stories - in every sense of the word. She and Eliana frequently end up in passionate arguments over the validity of what Evangeline has said. It most often ends with her yelling at Eliana, "You don't know! You weren't there!" (This, of course, is true, because the entire tale has been fabricated.) It's wildly entertaining sometimes for Marc and me. Every once in a while, it goes a little too far and someone (or two someones) end up in trouble though. Evangeline is a passionate one, as is her sister. This can be unspeakably beautiful and dangerously explosive. She started taking a ballet class in January and loves it. She is especially excited to perform in a couple of weeks for the school Finale. She has a very fancy tutu dress with blue sequence. Her class will be dancing as though they are the elephant princes and princesses. (There's an animal theme this year. Each class represents a different animal and lets that inspire the choreography. For elephants, think graceful trunk sways and strong marching feet intermingled with plies and passe releves.) She just missed the cut off for the preschool program that our school district runs, so she did not attend preschool this past year but should begin in August. I think she's going to love it. She has loved having her own class about which she can talk to people, especially to her sister. I think she likes feeling big and that she has something special, just for her too.

Marc stays busy, but has one huge thing off his list... He finally finished our master bathroom!!!! It's been a project, mostly unattended but for a few days a year since before we moved into our house, a little over five years ago. He did a marvelous job! I have no pictures to show you though. Sorry. I have no pictures at all today. We are just waiting for the closet in the bathroom to be finished, but we decided to hire that out to the Closet Factory along with the master closet. They should both be finished in a few weeks. We need to empty them (and purge!), paint them, and clean them before Closet Factory comes. I wanted a little more time to accomplish that. We've got surgery recovery, end of school stuff, Marc's family coming to visit, the Finale, and Eliana's birthday party to plan. He got a new car a few months ago and loves it. It's a Chevy Bolt. After being on the waiting list for a Tesla for about two years, his old Honda Civic was struggling more and more to hold on to dear functioning life. It was likely to be close to another year before he would get the Tesla and the Civic needed a decent investment to pass inspection again, so he test drove the Bolt and fell in love. I still don't know how to work all the bells and whistles (like the radio), but I have to admit that I have enjoyed driving it too. I love a manual transmission, but No transmission is fun too! It's cute and black and (after Marc did a major wonder in the garage) fits snugly next to our Honda Oddessy for overnight charging. :)

I am getting along. I have continued to struggle with my health, respiratory health in particular, but  all the tests they've run on me have come back ok. I don't appear to have any immune deficiency. Even when my lungs sounded their worst (really the lower R lobe) and I ended up with zero air movement and couldn't catch my breath if I just walked across a room, the CT scan (taken a couple of days before the lung collapse) showed no signs of pneumonia. This is great news, but begs the question, "Then, what is wrong!?!" In my two most recent appointments, it was postulated with the force of a diagnosis (but there isn't one for this) that the root of it all is exhaustion beginning over three and a half years ago with my labor with Evangeline (she'll be four in September) and continuing to the present, though it was most severe for the first year. My body is weak and unable to fight with any gusto whatsoever when germs make their moves. The chronic bronchitis has especially exhausted my lungs, so they are now simply beginning to collapse. This is not good news, but it isn't as bad as pneumonia. (Maybe.)  My prescription for a return to health, therefore, is ...... REST!! ('Cause that's what mom's with young, busy and special needs kids do! - Wait... It is?) I have not been sick for the past three weeks. I'm hoping to keep stretching that from more weeks to months and even years. If I do, however, it's back to steroids and antibiotics. I also began a new inhaler (my second daily inhaler, third inhaler total) which is typically prescribed for COPD patients. It might be helping, but I'm trying to make some strides to get some rest here and there and trying to not completely fill my schedule, but that is much easier desired than accomplished. I have managed a handful of naps and even a day out for a float and lunch with a friend. I've been told that my sleep/rest debt is so great it will likely take longer to recover from it than it took me to dig myself into the depths of it (where it is dark and tempts me to sleep every time I sit down, but I can't). I'm hoping that if I am able to make successful strides toward getting more rest, I'll be able to recover soon, soonish at least. We'll see. In the meantime, I am grateful for countless things, and as I struggle, I am reminded to pray for those who are experiencing similar things, but don't have any where near the comforts I enjoy. I pray mostly for refugees trying to escape with their lives to a place that isn't filled with a constant threat of death or worse and I pray for those who are still in those places filled with violence and suffering beyond anything that most of us Westerners can imagine.

We appreciate your prayers for us, but encourage you to consider those who don't have access to clean hospitals or even clean water, those who live with the expectation of death and suffering, with hunger and homelessness. Please, pray with us for them and how we might help. There is much to be done, but if we all put our hands to the work, the burden is easier shared.

Lucas is out of surgery now. It went well. I will now sit with him as I wait for him to awaken enough to have a drink so we can go home.

Blessings, friends. Love and thanks to you.

Friday, January 5, 2018

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!


drive and disney 2015

More disney 2015

my dad


some 2017

Saturday, January 30, 2016

A Fat Lot of Good Intentions

Life continues to sweep me away with it and I continue to not update this blog. I'll try to throw out another six months worth of life now, likely scattered, much out of order and missing large chunks. ;)
We were told last year that the CBD oil would be available "in the fall". It wasn't. We then heard "by the end of the year". It wasn't. Next we were told January. That didn't happen either. The latest is that "production should be beginning in February". As far as when the end product will be available, we don't know. My guess is March, at least. It is a little frustrating, but I'd guess we aren't as frustrated as the two local suppliers who are trying to get on their feet. They have to jump through a lot of flaming hoops and they are working hard on doing so. We will wait and, in the mean time, we are trying other things.

We have seen the seizures (sz) grow in severity over the past several months. When we switched to Dr Goretzke (Dr G), we tried increasing the ONFI, but it didn't help, so we dropped him back down to his previous dose. Our next medication attempt was adding Depakote to his other medication repertoire. It didn't seem to help much either and with possible side effects such as sudden liver failure, we weened off that one. Without knowing how long we'll have to wait for the CBD (and there is nothing that says it will help either, though there is some evidence that it might), Dr. G suggested we consult with an epileptologist. Dr. G is a general neurologist whose practice covers a multitude of neurological issues. He thought it might be beneficial to speak with someone who just works with seizures. We met with Dr Fenton early last week.

After going through a brief history, we began to talk options. We settled on one med and then realized it is a sulfa based med and Lucas is allergic to sulfa. We then took a few more minutes and Dr Fenton suggested another med, one, surprisingly, we've never tried. It is related to Tegretol which Lucas took many years ago. This one is called Trileptal. We began it last Thursday night and then increased it to a morning and bedtime dose as of last Saturday. He's only been taking it for a week and he is at only one fourth of the dose Dr Fenton would like to reach based on his size, but we have already begun to see improvements. The sz seem to be decreasing in both frequency and severity! Until last night, I was beginning to get a little hopeful. Marc and I have been talking about possible vacations for the kids spring break. I wasn't so concerned about the wait for the CBD, because this seemed to be helping.

Getting Lucas into pajamas last night, I noticed a slight pinpoint rash on his torso. My heart sank a little, but I thought it might possibly be related to his wearing a new Benik vest, a tight-fitting vest with metal supports in the back to encourage his correct posture. (We got this after meeting with Dr Anderson, the orthopedic doc, in late November. We were concerned about Lucas developing scoliosis. He does not have actual scoliosis, but does have postural scoliosis and slight kyphosis. Dr Anderson felt confident that we could correct both with the Benik brace.) I thought that the rash might simply be a heat rash. This morning, however, it has spread from torso up his neck, and down onto his arms, hands, legs and feet. This is not a heat rash. We will be stopping the Trileptal. Monday, I will call Dr Fenton and figure what to do from here.

I cannot deny my heart has dipped a few feet below the surface of the water. I always am hesitant to raise my hopes and ever mindful that my true hope does not lie in medications, doctors or procedures. My hope lies in the Lord Who made Lucas and loves him more than I do, but still...

There is much more to say, but rather than wait for another opportunity for me to sit at the computer for a few minutes, I'm posting this. I'll try to get back to it soon with updates on what's next and tales of Lucas the cowboy (he rides Cappy, the wonderful horse every week!) and maybe even some pictures and video from him on the horse, Thanksgiving, Christmas, the school fashion show and more. :) Blessings, dear friends and family. We love you and thank God for your support!

Thursday, August 13, 2015

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!

Saturday, March 14, 2015

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!

Wednesday, March 4, 2015

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! :)


Monday, June 30, 2014

Post, Post-op (very post)

I would guess that you all assumed that Lucas made it out of surgery all right back in December since I never updated and we didn't get any freaked questioners here on the blog inquiring after him. There were a few posts on facebook, I think, about him coming out of surgery all right, so maybe everyone saw that. I don't know. I, obviously, am not much of an internetter. (I do, however, still enjoy adding my own additions to the English language. Who knows; someday, something might be mainstreamed. Last year's word of the year was "selfie". What a travesty is that!?!) I find myself here, awake earlier than desired with a household still asleep and I figured I could try an update.

I am certain there is much to say and I always feel a little bad writing so much for folks to read, but a dear friend encouraged me that she always takes the time to do so, even if she has to go back to it multiple times, so, this is for you, Katie. Thanks for the kindly words. :)

Lucas did indeed come out of surgery all right. He had all of his molars capped in stainless steel and no teeth pulled. :) As for urology: We ended up with a catheter again which we were not expecting. He had it in for about a week. I attempted to send him to school with it the following Monday (his surgery was on a Friday), but the place where it attached to his leg came unattached and I was not going to risk having that pulled out of him. (Yikes!) So, we stayed home and laid low. We even took our Christmas photo with his urine collection bag on the floor at his feet.

Both of his post-op appointments went well and at the second appointment, we officially said our adieus to Dr. Austin. He has been such a fantastic doctor, all around. We look forward to running into him in the halls at Children's Hospital while there for other checkups or at the zoo or when out to eat. We are grateful that we do not have to pay to see him in his office anymore! 

As we have done for the past few years, we spent Christmas in New York again with Marc's family. Before we left, we had a great Christmas gathering at our new house with my mom's side of the family. It is a new tradition hosting it here and I think it's great. I don't know that we took a single picture of the event, but I think we took a few photos in NY. I don't have them up yet, but at least I'm starting this, right?

January brought some severe morning sickness that lasted for over three months. February brought Zofran, anti-nausea medicine, that kept me from any further weight loss. We also saw Dr. Lueder in February, the opthalmologist, and were told that Lucas' astigmatism has improved dramatically. This is almost unheard of. We got him a new Rx and sometimes, he wears his glasses. Regardless, we were excited. :) The last weekend of February/first of March, Marc convinced me to leave our children and travel to California with him. I think that I  mostly only agreed to this because I felt too terrible to argue, but I think it was good that we did it. I was still sick and we both ended up with colds on top of it, but we did have some good times too and got to visit our beloved friend Desiree who we miss terribly. :) I do have some pictures of that, but here ends the photo gallery display for this post. I have much, much more for you, but it will have to wait. 

The biggest news from March (aside from my heaving stopping and appetite beginning to return) is that Lucas went away to camp, by himself! There is a camp in a tiny town in Missouri (Purdy) called Camp Barnabas. If any of you folks are Extreme Makeover Home Edition fans, you may have seen it on one the show's episodes. (Actually, I think it was a two show episode.) It is a camp for kids with special needs of all sorts. It isn't even limited to kids; ages go up to 35, I think. Mostly it's kids though. A woman from our church told us about it years ago. She has known the founders and has volunteered there many times herself. Children seven years old and over are invited to a week in the summer of amazing activities typical to a summer camp, but adjusted for folks with all kids of adjustments necessary. They swim, horseback ride, do a ropes course, have dance parties and campfires, sing silly songs, eat chili dogs and all sorts of other things. They have amazing staff which includes many many medical folk and they have a ton of fun. Camp Barnabas has added to the summer camp option, a weekend camp in the Spring and another in the fall. There aren't as many activities, as there isn't as much time, but they still cram plenty into the time they do have. 

Lucas didn't turn seven until May, but Barnabas made an exception for him to be there so that we could test the waters a bit. (I was really struggling to wrap my head around leaving him for two nights in a new place with new people. Plus, I miss him like crazy when we're apart, even just in his school day. I know I'm a sap, but I am entirely ok with that.) Marc, Eliana and I stayed in Branson, MO for the weekend, about an hour and a half away from Purdy, so that we could be close enough if needed and wouldn't have to drive 12 hours Friday and again Sunday with there and back trips. We took Eliana to Silver Dollar City on their opening weekend and she rode her first roller coasters and was very brave about it. One of the nurses at Barnabas kept me in the regular loop with text messages and a couple of pictures which was not in her job description, but I am eternally grateful for her extra love and consideration for this mommy.  :) I have opted to not send him to the full week this summer because the week that would be ideal for him is the week before school begins and only a week or two after school begins, DeSantis baby number three is coming. I decided I would rather have some time with my handsome Moose before sending him to school and having a baby. We will certainly be spending a lot of time in our pool here at home this summer and I hope he won't miss camp too much. We'll likely send him back for the fall "Barna-Break" though. When Eliana is seven, she will get to go to camp with him as they have a sibling program too. Amazing place, seriously. Amazing!

April brought our first family trip out West. We had a wedding in Arizona (Congrats again, Matt and Lisa!) and decided to turn it into a vacation. We have not traveled west, in part, because we didn't know how it would effect Lucas' seizures. They are so easily influenced by his sleep patterns and going to a time zone two hours earlier could have meant starting our days at 4:00-4:30am and ending at 6:00-6:30pm. We scheduled our flights so as to try to avoid this and Lucas was remarkable. He adjusted to the new time zone in a day and returning home did the same. While we were there, we got to visit with dear friends we miss, both briefly at the wedding and spent a little more time with some folks who have relocated there from Brooklyn. (We love you, Turrigianos, Hsus and Petrowskis!) We also got to see some of the amazing landscape there including the Grand Canyon. We took a ton of pictures, but have not even gone through them yet. There are so many. I will get them up for your viewing eventually though, hopefully soon. :)

May, we were out of town again for my baby brother Judah's wedding. His wife Rachel (who we adore!) is from Wisconsin and that is where they were married. It was a whirlwind weekend bookended with a lot of driving, but it was great. She was lovely and he had that classic dopey grin that I think every groom should have as he watches his beloved approach to join him. There was dancing and cookie dough and light sabers (two of which came home with us). We are so thrilled for them and thankful that they have decided to relocate from Chicago to St. Louis. We look forward to having them in more of our family photos. :)

June brought us a new neurosurgen and some out of towners for Eliana's fourth birthday and Fathers' Day. Dr. Leonard who had been with Lucas since birth, maybe even before, took a position as the Head of Neurosurgery and at a Children's Hospital in Iowa or Idaho or Ohio. (I know you are all very different, and I mean no offense. I just don't remember which it was. Sorry.) Lucas is now a patient of Dr. Matt Smyth (who has never seen Doctor Who and I advised not to bother with the Matt Smith episodes anyway. The show went totally downhill after Davies left as head writer). He seems very nice and has a good working relationship with Lucas' neurologist, Dr. Altman. Marc's parents came in from Brooklyn for a short, but wonderful weekend visit. This is the first year that we haven't made it back to NY yet. The combination of busy and being pregnant has kept us from making it there. We are grateful for their eager willingness to come to us and are looking forward to getting back there sometime after the baby is born to see others and meet Marc's sister's baby who is expected in about three weeks!

That brings us to today, the last day of June. We have checkup appointments for both of the kids today. I will get to see how close to 70 pounds Lucas really is, as that's what I've been telling folks he weighs. Things should be settling down some in July. I am excited to look in my planner and see so many blank, unscheduled days. I am hoping to mostly keep it that way. Life's been good, but I haven't sewn since before Christmas and I want to lounge in my pool with my littles and I like having no agenda. :)

There have been so many other things that I could share with y'all, (new gate trainer finally arriving, new stroller, seat and net swing too, field trips, Special Olympics, Baby and bridal showers, more weddings, more doctor appointments, fall and head busting open with trip to the ER, summer school, etcetera, etcetera) but Lucas is awake and I need to feed him breakfast.  

I leave you with this thought: In addition to all of the above, we have also had some deaths recently. A couple of them have been a bit shocking, a couple not as surprising, but all have caused me to keep the consideration of the temporary-ness of this life in the forefront of my mind. Anything could happen at anytime. A bee sting and unknown allergy (Kathy), a car accident (Dave), a poor recovery from surgery (Joe), a slow struggle (Lorraine, Gene), an unknown festering infection (Jan) and there are others. It's been four years since my friend Dan drowned, a good swimmer. Longer since my friend Ray, on the cusp of a bone marrow transplant, got pneumonia and that was it. Stuff happens. What are you doing in the mean time? Who or what are you serving? What do you value - not what do you say you value, but what does your life show that you value? "Where your treasure is, that's where your heart is." So where is it really? Do you know that Someone made you, on purpose, with purpose? Someone loves you even if you don't want Him to love you, even if you reject Him. There are tough questions that challenge us all, but there is an Answer. Don't wait until the end to get right. Get Right Now and live right. It isn't always easy, but it is always worth it. 

You all remain in my prayers.