|Layne's new nebulizer, which so far works better. We call it dragon face since he is really super into dragons right now.|
Layne lost his glasses. We searched everywhere. They are gone. It is unfortunate that they need to be custom made. It is not generally a good idea to give something that costs a few hundred dollars to a toddler to carry around all day every day. We think they were lost in a melt down at the hospital.
After hours of searching for glasses, we find mice. Apparently, during our night away at the hospital, not only did we lose glasses, but mice moved in. They did quick work. In one night, several had come in through the ceiling and eaten everything in our food and dish cupboard. Our rental house is not in good condition. Things have been broken for a long time without any response from the landlord. Beyond that, it is just patched up and terrible. It is not really in acceptable condition anymore. Additionally, I can't even access the back half of the house in my wheelchair due to the hallway being too narrow. That part of the house includes both bedrooms, the bathroom, and broken laundry machines.
Then from lost glasses and gained mice, it all hit me. All at once. Suddenly, I was processing all of my recent health news. There were so many different emotions.
Last week, I saw several different doctors. In fact, between Layne and I, we have doctors' appointments every weekday this month, and every week have to travel to Seattle at least once. Anyways, I got bad news after bad news.
My eye doctor said my decreased vision is a neurologic problem. She said there is nothing she can do to help my vision. No glasses, no surgery, no medication. There is nothing. And it will likely get worse over time. It seems the optic nerve directly behind my eye is damaged, but of course being right behind my eye cannot be directly seen. I also have different pupils sometimes. What I mean is, sometimes the right and left are different sizes or shapes. When I went to the doctor they even got a photo up close of them being different shapes. I thought I was just imagining it before, but she brought it up, not me. I'm losing a bit more of my field of vision. Another curious thing is that I have a nystagmus, which means that my eyes quickly move back and forth when looking at something close. It is curious, because it is not only uncommon, but mine happens in unusual situations compared to others with nystagmus. All of these things have made it hard to read, which next to hiking is my favorite thing to do. It makes it hard to see in general, but especially to read.
Similarly, I saw my nephrologist, who also basically said things will continue and nothing can help. She is the one who has been charged with the task of figuring out why and how I'm losing phosphorus. It is rare in the first place. The most common ways to become low are to lose it from dysfunctional kidneys or not eat enough (with the latter being improbable if you are eating something). It seems we have ruled out both of those (yay for functioning kidneys!). So then we went over every possible rare complication that could cause low phosphorus and none of those makes sense. So we have come to the conclusion that my body is not regulating phosphorus properly. The process by which this is happening is totally unknown and doesn't fit with any known reasons, but it is clear that it is a process happening within me, rather than a problem of phosphorus going in or out of my body. So all we can do is damage control. When I get low, hopefully it won't happen so quickly that I will be in critical condition too quickly to remedy it, and I can take more phosphorus tablets to bring myself up. It's just too rare, weird, and doesn't fit with medical knowledge. Get this though, I have a prescription to eat as much chocolate, nuts, and chocolate almond milk as I can to bolster my phosphorus intake. I know, it's okay to be jealous.
Another disheartening thing I learned about myself is another sign my body is in serious trouble (as if I needed more). I had a few doctors order blood work on my thyroid to make sure it is not contributing to my issues. My primary care doctor got the results and said it is not possible to have those results so there must have been a mistake somewhere. Generally, you have to have one high and the opposite low. Which one is high vs. low determines whether you are hypo- or hyperthyroid. Mine didn't follow that pattern, nor were they normal. So I thought, okay that's weird, but whatever. Then, my nephrologist informed me that there is no mistake and that is a real thing. It just generally doesn't happen to someone who is walking and talking. It is a condition called sick euthyroid. It mainly happens to people in the ICU, and is a sign that your body is shutting down or in an otherwise serious condition. I guess I am just able to keep going through anything? I think that generally throws doctors off. I come in, greet them with a smile, tell them my story and what's happened, but I stay upbeat and positive. So it is hard to understand the disconnect between my positive attitude and my horrible symptoms. Basically, if I am not upbeat, it will swallow me whole. There is just so much on my shoulders that I have to stay positive to survive each day.
I had another sleep study last week too. As is usual for me, there were extra equipment that they didn't know how to use/don't normally use, that I required that they had to figure out in a hurry. I may actually be getting my BiPAP any day now! Yay to breathing!
A few weeks ago, I also had an extensive MRI of my brain and spinal cord. It was two hours of sitting in the MRI trying, but failing just a little, at staying awake the whole time. The results showed that I have small demyelinated areas in my brain, which indicate multiple sclerosis or another inflammatory process. Several other doctors have brought up MS, but I am not sure if we are considering this a diagnosis or still working on it. In my call from the neurology office today, I was informed I may get a spinal tap next week. Ah I hope not, doesn't sound nice.
My audiologist also said that my hearing has significantly decreased. I got my hearing aids adjusted, but unfortunately, it is clearly a neurological problem too.
Then there is all of the day to day stuff I already have to deal with with my body. The fever I've had for a month. The worst arthritis pain I have had as of yet. I have had so much pain that I can't sleep, think or carry on a conversation for the majority of the day. Washing my hair put me back to square one of not being able to walk at all again. Yes, I couldn't even stand on my own after washing my hair. I appears that my wheelchair is a permanent situation.
So that's where I am at. It sounds like some doctors think I might be beyond hope, maybe even dying, and others either do not or just haven't committed to that yet.
Layne has finally gotten in to see a bunch of specialists in Seattle this month, which is a good thing. I fear nothing if I am educated about it. Well, maybe not quite nothing. Anyways, he has started an autism evaluation. This consists of four separate days of testing, meaning four days of driving to Seattle. Personally, we don't really see autism in him, but so many different professionals have different stances on it that we wanted to put it to rest. He is very social, but has lots of delays and sensory processing challenges, behavior issues and some quirks. All of these things aside from being social can be markers, and there is such a wide range of autism on the spectrum, so who knows.
We have had several different people- doctors and therapists- point out that he seems to be having speech problems again, so we will need to figure that out too. He will probably need speech therapy again. He knows a ton of words, but doesn't really use them independently a whole lot. It's kind of hard to explain. For example, if you ask him a question, he will repeat the question instead of answering. Or he knows several form sentences that he is expected to say like "can I have ____ please?" in order to get something. And he is so academically bright. He already knows all of his letters, numbers, colors, shapes, etc., and can recall them, as well as names of things easily. He can form sentences, but can't really have a conversation. I can understand most of the words he uses, but other people can probably only understand about 15 or so without asking me. So he can talk, just apparently not the way he should by what I am hearing from others.
I have been getting glimpses into how others see him lately that weren't really ways that I saw him before. I know he has always been a difficult kid, but this week one of his therapists said something that made me think. She said that he was not the hardest kid she has to work with, but up there. And this is coming from a woman who can hold her own. I think she could handle any kid, so that is saying something. She holds a dear place in our hearts and our family, because she has made such a difference in our lives. Yes he is difficult and we knew that, but since he is our only child, it is just normal for us. I wonder what it would be like not to have to think so hard all the time how to do each little task of your day to accommodate all of the different needs of our family. Another glimpse is how he interacts with other kids now that he is getting older. He tends to be the kid that gets picked on. I didn't actually expect that. I thought with his high energy, he would be the bully, hopefully on accident. I'm not sure if it's because he is so much smaller or he doesn't know that they are picking on him, but he doesn't tend to be able to stand his ground.
He also saw a neurologist this week. Whew, I was pretty unhappy leaving there. The doctor was cocky and dismissive. He basically in two minutes and nearly no testing that we are wasting our time, among other rudeness. I called back the next day and said I was unhappy and it needed to be remedied. Every professional he has seen said he has certain issues. My question is are we still dealing with prematurity fall out or is there something more? Preemies are 'supposed' to be similar to their peers by age two. He is not, so we need to make sure we understand why. The clarification I got was that Layne doesn't appear to have neuromuscular disease, but does appear to probably have a neurological disease. They suggested he may have cerebral palsy, but to get a proper diagnosis he needs to see a neurologist in the neuro development clinic. If you think he has a neurologic problem, just not in your specialty, don't tell me he has no problems at all despite what every other person is telling me. Oh gosh I was pretty mad when we left. I will always advocate, civilly, for what I think is right for my baby. Good thing I did too, because now he will get the proper care.
So I have been very sick, Layne has had a lot going on (but not been more sick than usual, yay!), have a ton of medical equipment to buy (but the church graciously helped with new glasses!), and we have to move out of our crappy falling apart rental house. Moving out of this house, unfortunately means moving out of the area, which means we have to lose some of those professionals that have made a difference in our lives, some sweet friends we have made, and a wonderful church . But my Dad has a place for us lined up that sounds like I will be able to move around in the house better on my own- get some of my personhood back and maybe some more of my motherhood too. I had an incident recently where I got stuck in a part of the house in a potentially dangerous situation. That place is not immediately ready, so we are taking a very long road trip. We are going to see a bunch of amazing stuff, live life on the road for a bit, experience some things we have always wanted. We were going to try to live in the tiny house during that time, but we spent the last week trying to figure out how to fix it and realized that I can't even use my hands, or walk, or be out of pain enough to stand the idea of consciousness until several hours after being awake in the morning. So that dream is officially dead. Boy, I wouldn't let it go down without a fight, even when friends and family were saying it was silly. I mean, we built a house. And I will never be able to do that again. But despite my tough fighter spirit and plain stubbornness, I was wrong and it is too hard. So once again, we are forced to sell it, for real this time.
It's just a lot all at once.
I watched the movie 'God's not dead' a little while back, and there was a line that struck me. A man was telling the main character that God isn't real, because he prayed for God to save his mother's life and she died. The main character said "Sometimes the answer is no". I thought about that for a while. Sometimes my son asks me for something and at that moment he feels like he really needs that thing. I might know better and say no. From his perspective, it feels outrageous that I would say no and can't understand the bigger picture that maybe that thing is not what he needs. Still my answer is no, no matter how much he might beg and barter. So I hope that God is real and God is listening and just knows what I need better than myself.
Also, our story was printed in the Whatcom Parent to Parent summer newsletter. They are an agency that helps to support families with children with disabilities. You can check it out here http://www.p2pwhatcom.org/newsletter.