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.
No comments:
Post a Comment