Back to School!

It's been a fairly long summer here and I am actually somewhat relieved that Dear Son has started school. Now that's he's graduated, he's moved on to the Transition Center. This is a facility that is paid for by the school district where special needs students can attend until their 22nd birthday. After high school, they can exit the school system and move into a day program or choose to remain in the school system and attend their day program. The difference between the two is funding. You pay out of pocket for the day programs and transportation; most of the time Medicaid will help fund the day programs however regarding transportation, you are on your own. For that reason, I choose the Transition Center through school. The benefit for Dear Son is that he knows all of the kids and more often than not, they have many of the same people that assisted him in high school. The Transition Center focuses on life skills. There is still an IEP (Individual Education Plan) in place and he still receives physical, occupational and speech therapy.

As for Dear Son, we met with the neurologist last week. As you are aware, Dear Son has had a rough summer in terms of seizures. I had been in contact with the doctor on/off all summer and he's been tweaking his meds. About three weeks or so ago, he made a medicine change that seemed to help however Dear Son continued to have seizures every day. One of the issues that we have is that we are getting to a point with Dear Son where they are running out of options. The neurologist increased his vagus nerve stimulator (VNS) and the battery life is now less than four years; we just had the battery replaced last year. Dear Son is on a lot of meds and he's nearly maxed out on those medications. In addition, while there is a newer seizure medicine they could try, once they use it, they won't have any options left. The neurologist instead will review Dear Son's previous levels and increase one of the meds to see if that will help his seizures. He'll follow up with me this week regarding the change.

We also discussed school. Dad was quite insistent on Dear Son attending school full time, five days a week and I told him that will probably never happen again. Dear Son struggled to attend summer school for four hours, twice a week. As a result, I asked the neurologist to speak with Dad regarding school. The neurologist explained to him that Dear Son has deteriorated significantly in the past year and that he could no longer attend school on a full time basis. The most the doctor would agree to was three half days a week. In addition, he was extremely concerned about the upcoming respiratory season where Dear Son is concerned. He explained to Dad that Dear Son almost died last fall and that we may have to keep him home to prevent him from getting sick. Dad was adament about Dear Son attending school so hopefully he understands the situation a little better.

I contacted school and they are working on the transportation for school. Initially Dear Son attended on Tuesdays and Thursdays from 8-noon however now that he will be going three days a week, I asked school if we could change the days to Monday, Wednesday and Friday so that Dear Son could have a day of rest in between. Beginning next week, he'll go to school from 8 to noon on Monday, Wednesday and Friday.

Tomorrow will be ten months since Dear Son was hospitalized for H1N1 and the viral pneumonia. As you will recall he was on a ventilator within 48 hours of contracting that and it took a long time to recover. It was months before he could attend school again and when he did it was only one day a week at first. After that hospitalization, he never moved his legs/feet and ten months later, he has never recovered that skill. In addition, he lost his ability to move his arms and hands. While he can still move his fingers, he can't move his hands so if I roll him over and his hands get bent in an odd position, they'll stay that way until I fix him. Likewise, if I move him in the hoyer lift and his hand or arm is twisted, he can't fix it unless I move it. This is just another milestone he's lost and never likely to recover.

The past ten months have been tough for him and a lot of work for me. As you know, I'll never, ever complain about taking care of Dear Son however that doesn't mean it isn't work. I don't think I've worked this hard taking care of him in all the years. While it can be tough taking care of someone 24/7, it's also one of the most rewarding jobs you could ever have. There is a certain amount of pride when you devote your life to taking excellent care of someone, especially your child. He is such a delightful young man. I call him my "happy boy". When he was a baby, he always had a smile for me in the morning. After this last medicine change, he seemed a bit better and started smiling again. I had been kind of down because he hadn't been smiling anymore and looking back, I think it was just that he didn't feel very well with all of those seizures. Now, when I change his diaper he tries to talk and says "hi". I am always amazed at how hard he works to give me a smile or to say hi. It is really something. It still makes me melt after all of these years.

The care though, is taking a lot out of me. I am tired a lot and it's a bit tougher now that I am , ahem, older, to be up all night and then up all day. I give his last meds at midnight and then start his feeding pump at 3:45 a.m. so his breakfast will be done in time to get him ready for school. In addition, it takes constant attention to detail making sure his arms, hands and feet are positioned correctly along with turning him over frequently so he doesn't get bed sores, giving meds every six hours and not getting a whole lot of sleep. I've also been giving him daily massages with organic virgin coconut oil (I use Now Foods Organic Virgin Coconut Oil; it's $9.99 for a 12 oz. glass jar at Whole Foods.) to reduce the edema in this legs and feet. The coconut oil is a great massage oil so it makes massaging his legs/feet easier. Last year the cardiologist recommended massaging his legs/feet twice a day to reduce edema. Since I've been massaging him regularly, I've been able to reduce and/or eliminate the swelling in both of his legs and his right foot. The left is always swollen and the right requires constant attention to keep the swelling under control. I feel really good that I've been able to keep the swelling down. In addition, I started using the virgin coconut oil on his pressure sore on his right ear. He had a tiny sore on his ear for almost two years and I had tried everything to get rid of it. I applied coconut oil every day and it not longer has a scab on it-it is pink most of the time and some days not visible at all. Other than that, Dear Son doesn't have any pressure sores, which is remarkable considering he is somewhat bedridden. I also have come to enjoy giving him these mini massages and it's great when I can see some results.

As for school, we are blessed. His freshman/sophomore teacher is now his teacher at the Transition Center. This woman has amazing patience and it's a pleasure to work with her again. I am sure Dear Son misses his teacher from high school since she was younger but this one is really quite nice. In addition, they have worked to make sure that they are doing everything they can to help Dear Son-he is the last pick up in the morning for the school bus and the only drop off at noon. That way, he doesn't have to ride the school bus any longer than is necessary. The doctor also asked that they notify me if any kids get sick in school, so that I can keep Dear Son home if necessary, since we need to avoid any respiratory infections. They have agreed to work with me on that. We did have some issues at summer school, which I addressed with the Director of Special Education, however they have worked all of those issues out. There is a different team in there for summer school so I am confident things will go smoothly.

Other than that, it's been a bit of a relief to get three or four hours to myself once in a while. Seven day a week care is quite a bit and I've been doing it for almost a year now. I remember last year, prior to Dear Son getting sick and I used to think it was a lot of work taking care of him 24/7 on a three day weekend when school was out, but this is quite another level. I am sorry I can't blog as much but I'll do my best.

And finally, I am pretty sure Dear Son is enjoying being back at school; I got him off the bus today and he smelled of perfume.

Note: Dear Son is eighteen years old and suffers from severe developmental delay, seizures and dystonia caused by a random mutation of the ARX gene. In addition, he has a progressive neurological disease.

Dear Son Bed and Breakfast~The Meaning of Rituals

I have this little ritual on Sunday*, when Dear Son is at his father’s. On that day, it’s a day where I can sleep in and totally relax. I don’t have to go to bed after giving the last meds, which is at midnight; I don’t have to get up in the middle of the night to roll him over, or change the occasional diaper, or get up when he fusses and needs me. I don’t have to be up early to get the meds in (they are every six hours) or the food going (so he doesn’t get meds on an empty stomach) so I get up feeling refreshed. I usually try to enjoy the day and then do minimal housekeeping then get out with friends, do a project around the house that I’ve been wanting to do, or something like that.

Prior to doing that though, I take the time to change Dear Son’s bed linens. I normally do this a minimum of once a week anyway, but I try to make sure that everything is perfect when he gets home. That means fresh sheets on the bed, blanket and coverlet washed, bedroom dusted, supplies refilled (toileting and meds) and anything that makes it easier or nicer for him when he gets home. I scrub the bathtub because I know Dad will give him a bath when he gets home. I make sure the bathroom floors have been steam cleaned with my new steam mop. His bed, will be turned down, with the bed pads in place and fresh sheets on the bed. I do this for him, so he’ll know he is loved and well cared for, kind of like Dear Son’s Bed and Breakfast. When he comes home, I tell him how happy I am that he is home and I always mention that he has fresh sheets and have him smell them. I don’t have any clue if he can really smell them, and as a matter of fact, I use a fragrance free green laundry detergent so it probably doesn’t matter a whole lot but it makes me feel good. Dear Son sometimes gives me a big smile or at the very least, opens his eyes wide to acknowledge that he does hear me.

While I have always kept a clean house, I started this ritual a while back. Prior to that, I used to change his sheets on Monday and somehow this seems to make more sense since I have more time. But the bonus of this ritual is that I’ve come to enjoy it. Doing something for someone is nice if not nicer than doing it for yourself. While I do enjoy pampering Dear Son, such as rubbing his feet and legs with virgin coconut oil to stimulate circulation and reduce edema, I have come to view these tasks as a way to be thankful for what I have. Of course you know by now, that Dear Son is the most important thing in the world to me and how much I love and treasure that boy. But what I do is also for me. It’s a way to savor my days and time with him. Most Mom’s get to make meals for their kids. That’s something I really loved doing. Instead, I open a can or two of formula. It never feels right, it’s never felt right and it took me a very long time to get over that or at least accept it (tube feedings). I tried making liquid meals for him but it kept getting stuck in the feeding tube so I gave up. But my point is that these little rituals help me savor all of my time with him. It’s the same feeling you get when you sit down and eat a meal with a beautiful tablescape and a home cooked meal. It enhances the enjoyment of the meal. It also represents a shift in my thinking from “have to” to “love to”. I would hope it also sends a message to him that he’s important and that he’s loved. In the end, I suspect I am going to miss my little ritual after he’s gone. While it’s easy to wish we didn’t have to do all of these chores in the first place, it’s quite another to be thankful for the opportunity to make someone’s life a little nicer, a little more comfortable and to feel loved. I think at the end of the day, we all like that.

*Dear Son spends every other weekend at his father's.

Dear Son Update

I apologize for the long delay between postings. Dear Son is having a rough summer. I haven't commented on it much but he has been having these cluster seizures since mid to late June. Essentially, he has a lot of little seizures in a row that seem relentless. Soon, he starts crying out, I come over and use his Vagus Nerve Stimulator which may or may not stop the seizure, then the process starts all over again in another minute and continues on for some fifteen minutes. It takes a reprieve and then this process repeats itself sometimes many times in a day. It is exhausting for him and exhausting for me. I have contacted Ped Neuro on/off over these past few weeks and he's tweeked some meds but we still don't have great control. Seizure control can be difficult at times because unlike most people with seizures, Dear Son was born without an gaba, a key inhibitory neurotransmitter. Dear Son had a long seizure on Wednesday that was fairly intense so I had to use Diastat (It's an emergency medication that stop seizures.). It lasted for some forty minutes total. I was fairly certain I was going to have to call the paramedics however it did eventually stop.

He had more seizures on Thursday and Friday. On Saturday, I started tracking them in the afternoon and he had a few every hour. Last night, I was up every 1-2 hours and at 4:45 a.m. he was crying out with a bad seizure. I got up, used his VNS a few times, then got his Valproic Acid. Sometimes that helps although it wasn't due until morning. After ten minutes or so the seizure was escalating pretty fast so I ended up using Diastat. I wasn't sure if I was going to have to call the paramedics or not since the seizure was pretty rough. The Diastat stopped the seizure within about 5-6 minutes though. That was the second time in a few days that I thought I might have to call the paramedics so I know that things are not very stable.

At 8:05 a.m., he had more seizures and I gave the rest of his morning meds. Hopefully, the med increase that Ped Neuro Doc made on Friday will help. Dear Son has an appointment with him next week. At that time, they mentioned a newer med that has been working well for patients that they may try.

I'll try to post when I can. At this point, I've been doing pretty much seven day a week care since last December which doesn't leave a whole lot of time for doing much else. School starts at the end of the month and for now, Dear Son will go two half days a week. I doubt he'll ever return to full days of school at this point and the half days will be stretching it.

Sweet and Sour