Friday, August 31, 2007

Spine Surgery Update

Surgery went fine yesterday. I am glad it's over. Had severe nausea after the surgery which is expected but getting better. Had a lot of bleeding when they took both IVs out; they had a hard time stopping it. Went in at 9:30 a.m. for a 10 a.m. surgery. Surgery was done at 12 noon and took 1.5 hours, woke up at 3:30 p.m. with severe nausea and out of the hospital by 6 p.m. I was ambulatory and totally independent by 9 p.m. Didn't sleep much and still can't lie down yet. I have some new numbness in my right thigh but that should go away soon.

The pain is gone from my left leg however my back is still pretty sore so it will be a few days before I can tell if it worked. I am taking some extra strength Tylenol right now for pain.

I am home this morning and on my own today.

I called and spoke with the Respite House last night caring for Dear Son. They put him in a rocking chair after school and he loved it! They said he was so happy! They started his dinner by 5 p.m. and had his meds in by 5:15 p.m. so that made me happy. He has another young man around nine or ten years old for a roommate and he loves that! I hope to talk to him today and I'd love to visit him tomorrow if I can get there.

That's all for now. Thank you for all of your support.

Thursday, August 30, 2007

For the Love of Dear Son…

I saw Dear Son sitting in the wheelchair. The school bus had just arrived at our house and the bus driver and his new aide were searching for my number in their cell phones. Normally, I am always there when Dear Son gets home from school, but today, the bus had arrived a half hour early and I was just pulling up behind it. The aide saw me and turned Dear Son’s wheelchair in my direction and I saw his face. He had a startled look on it, his eyes searching desperately for me, but he couldn’t locate his Mom. He kept looking around for me, not recognizing my car which was only twenty five feet away, behind the school bus. The bus driver caught a glimpse of me however it took a minute for him to raise the ramp with his remote control and then a few minutes or so before he could pull the bus forward enough so I could pull up into the driveway. Dear Son was still looking frantically around, his face startled as if to say, “Where is my Mom? Where is my Mom?” My heart broke as I saw his face. If it were a movie, they would replay the words over and over again, as I did in my head, imagining what was going on in Dear Son’s mind. I called out to him as I passed the wheelchair and told him I’d be right with him in a minute, as soon as I parked the car.

Dear Son processes things he hears better than things he sees, especially when he’s nervous. As soon as I saw him, I kissed him and put my hand on his shoulder and told him it was going to be fine. I said that I would never leave him alone and that I would be there when he gets off the school bus. I don’t think he felt very comforted as we walked into the house. I pushed the wheelchair in the living room, turned on the t.v. for him and told him I needed to get the groceries out of the car. After they were put away, I kneeled down and talked to him in the wheelchair. I looked him in the eye and told him that I was not going to leave him anywhere. I kissed him some more on the head and he leaned over and licked my hand. That’s his way of giving a kiss as he has little oral motor control. It’s also his way of thanking me for explaining it to him.

I have had this conversation with him many times before, especially when he’s in the hospital. I tell him that “where he goes, I go.” That’s our policy. If you get Dear Son, you get his mother. He likes it when I tell him that. I am like his protector, and more importantly the voice he doesn’t have.

The words felt different though since I knew that in twenty four hours, I’d be dropping him off at a facility that will care for him for the next two weeks, while I recover from back surgery. It’s been many years since I have trusted anyone to care for him for a twenty four hour period. My rule of thumb is that I will use a Respite sitter only during the daytime, after breakfast and before dinner is the window I use since I don’t like anyone else giving his meds. Too many mistakes. When I have a sitter, I prepare his lunch time meds in advance so there are no errors. He only has one medication at lunch, as opposed to the other times of the day where he has more. He’s on six seizure meds and two GI meds and the timing for him is important. Some have a half life and he has a Vagus Nerve Stimulator but the reality is that if you are too late with the meds, he can run into trouble. I am pretty punctual about his meds and never go over a one hour window. I give them four times a day but due to a recent change, I now give them five times a day. That’s a lot for someone else to administer, even medical professionals, and a lot of room for errors.

I talked to Dear Son several times over the last two weeks, talking about my surgery. I try to keep it fairly simple. I told him that I need to have some surgery on my back and have to go in the hospital so I have to have someone else take care of him for a while until I can lift him again. I tell him that he has to help me and then once it’s better he can come back home again. I tell him I need the surgery so I can keep taking care of him.

Deep down, it’s been difficult. I’ve have back issues since the third grade and I’ve needed surgery for many years to fix my issues. I also have three large disc herniations in addition to my existing issues. For the first time, my back issues were so bad, that I wondered how I can continue to lift him. I have been in severe pain for four months now. In the beginning, it felt like a bomb blew up in my back and I just wanted to scream at the top of my lungs the entire day. It improved somewhat after the anti-imflammatory medication but it’s been worse the last ten days since they had me discontinue it prior to the surgery. I do have a Hoyer lift but still, there are a lot of times when a Hoyer lift just won’t do the trick and you have to use your muscles. I worry about the “what ifs” and if I am going to be able to take care of him when this is over. The good news is that it’s minimally invasive with no hospital stay but I don’t know what that means in terms of really being able to lift him. I have him there two weeks.

I decided a long time ago that I would always take care of him and that I would do whatever it took to do that. Along the way, people will ask me about putting him in a home and in the last few years, I have said I “may” think about that when he’s an adult, but that’s as far as I will go. I believe that kids should live at home. I wouldn’t want to have to live somewhere else and I don’t want that for my Dear Son. When your child has mental and physical disabilities, they need you “more” not less. You are their protector. Mistakes happen and that’s why you need to care for them. I’ve done numerous hospitalizations with him over the years and I’ve seen many medication errors or medication that is late, etc. I know that being there is the best thing you can do for your child.

So tonight, I’ll have to take a leap of faith. I’ll drop Dear Son off after his dinner and I’ll have to let someone else give him his midnight meds, morning meds, get him off to school and essentially take care of him until I am able to get there to see him. He’s only three blocks from my house, but I am not supposed to drive for ten days. I plan on breaking that rule as soon as I am able since I can’t go without seeing him for more than a day.

I think about him often, especially when he’s at his Dad’s for the weekend. I love being able to sleep but the house is really empty when he’s not here. When he comes home, we have this little ritual. That night, when he comes home, as I tuck him into bed, I tell him that I hope he had a good time at his Dad’s but that I am really glad he is home. I tell him that it’s not the same without him here and that I can’t sleep very well because it’s true. He smiles when I tell him that and he’ll lick (kiss) my hand. So tonight, I’ll drop him off and tomorrow I’ll have the surgery. But I doubt I’ll sleep very well, until I see him and reassure him that he’ll be coming home soon.

In the meantime, I have some pretty nice nurses who will care for him. I think he’ll love the place, it sits on three acres and has a nice big rocking chair for him, along with a wheelchair swing for him to swing on (It’s a ramp that you roll the wheelchair on and then you lock the wheelchair and the ramp swings back and forth.). I think he’ll love the other kids too and there will be a lot of activity and a lot to do. I’ll miss him a lot. It’s a gift to be able to take care of your children and a gift to have someone to take care of. So today after school, I’ll sit him down and tell him again, how much I love him and that I need him to help me until I can come over to see him. I’ll kiss him goodbye tonight knowing he’ll be comforting himself with his Bedtime Barney as he goes to sleep. In the meantime, I’ll say a prayer or two, and thank my lucky stars that I have people who will take good care of him until I am on my feet.

Note: Dear Son's Dad and I dropped him off last night at the Respite House and it went well. Both the nurse and the Director of Nursing, whom I know fairly well, stayed late so they could admit Dear Son and so that it would go well for me. They had a nice big rocking chair in his room which he was thrilled about! He started laughing and wanted to go in it right away! He rocked while they admitted him and I signed the papers. I brought in a notebook of his morning, afternoon and evening routines to make it easier for them and I sent all of his food and changing supplies to school in advance so I don't have to worry that he won't have his food to eat. All in all, a nice drop off. Dear Son wouldn't give me a kiss before I left though! He was happily nuzzling his Bedtime Barney and laughing when I left so I felt good.

This morning, I go in for back surgery. It may be a few days before I can post again.

Monday, August 27, 2007

Dear Son appears in the July 31st edition of Neurology

FYI-For those medical professsionals, you can read more about Dear Son and his particular mutation of the ARX gene in the July 31, 2007 edition of Neurology-Volume 69, Issue 5 which can be accessed at The title of the article is, "Expansion of the first PolyA tract of ARX causes infantile spasms and status dystonicus." Dear Son is referenced in the article as Patient #4 and appears in Video #4. The video of Dear Son was taken a few years back shortly after the gene was discovered. An MRI of his brain is included in the article.

The geneticist also informed me that another co-worker will have a mouse model of Dear Son's mutation ready in the next six months or so and one of his colleagues in another city will have a mouse model and test different meds in them, although this will probably take several years.

As an FYI, Dear Son was tested for the ARX gene shortly after it was discovered. He was tested after the geneticist who discovered it was doing rounds (Dear Son was hospitalized at the time)and thought he fit the profile for the gene. Dear Son tested positive for the ARX mutation and shortly after that, I agreed to the video which you will see in Video #4. At around the same time, they asked for a skin sample (DNA) so they could create a mouse of the gene and I agreed. Although the gene is x-linked, I tested negative for the mutation. You can read more about Dear Son here.

I am thrilled that we are learning more about this gene however it is really hard to watch the videos of these kids.

Sunday, August 19, 2007

Top 10 Things Dear Son Has Taught Me

10. He taught me that children with disabilities are not children to be afraid of, but rather, children to celebrate. They are the children who will cherish all the love, kindness and happiness that you bestow upon them, not once in a while, but every time they look you in the eye.

9. He taught me that while to the world I am one person, to him I am the world. I feel this every time I wrap his arm around my neck and he nearly chokes me giving me a hug since he can’t control his grip.

8. He showed me that things I took for granted before he was born, are blessings to him and those like him. To be able to run, to be able to walk and to be able to care for myself are the big goals in life for children like him.

7. He showed me how to communicate and make friends with others, without using any words. I watched in awe as he’d go into a room, any room, and charm them with his smile.

6. He taught me that giving of myself to care for him, is a gift I give myself.

5. He taught me that the value of a person can not be measured by what they can do, nor by what they bring to the table, but to what you learn about yourself while taking care of them. That’s the best take away you can get.

4. He taught me that people who brag about the things their children can do to make themselves look better, only look better for a minute in public, but never as good as the mother who can look themselves in the eye every day and know they gave their child all that they had that day.

3. He taught me that the rewards of being a mother are not diminished in any way, having a child with severe disabilities. What a wonderful surprise.

2. He taught me that when there is absolutely nothing left, there are always miracles.

1. And the top thing that having a child with disabilities has taught me, is that when you love a child with for who they are, and not what they can do, your heart will always sing with joy every time you see their beautiful face.

Be sure to check out other Top Ten lists this week when David, from Growing Up With A Disability hosts the next disability blog carnival on Thursday, August 23rd.

Saturday, August 18, 2007


Dear Son was released from the hospital yesterday. He is doing well and seems to be more alert since the med changes. More importantly, he is sleeping through the night.

We were initially scheduled to be released this morning however I was having a lot of leg and back pain and I wasn't certain I could endure another night. We left the hospital at 4 p.m. yesterday so it wasn't much of a difference to stay until our 10 a.m. release this morning, especially since Dear Son was stable.

Dear Son thoroughly enjoyed the day yesterday, since the clowns stopped by to see him for the second time in the last two days. He had some big belly laughs with all of their antics. It's great to see him laughing so hard and he's always a little sad when they leave.

He was thrilled to leave the hospital yesterday. He laughed and yelled out from the minute I put him in the wheelchair to go home until he got outside to get into the car.

Thank you for all of your concern for Dear Son. It was appreciated.

Wednesday, August 15, 2007


Dear Son continued to sleep through the night on the new dose of medicine however he also began sleeping through the day as well. As a result of the increased meds, his EEG did not show any seizures, although it did show abnormal activity. Since that time, they have reviewed his seizure meds and decided to remove the Phenobarbital. The Phenobarbital, causes the other medicines to metabolize faster. Once they remove this, the drug levels of the other medicines should increase and therefore they will be able to reduce his overall number and quantity of medications since it will take less medicine to attain a therapeutic level. It will take approximately a month or so before that drug is out of his system and around three months overall to adjust the other medications. In the interim, removal of this medication may cause some breakthrough seizures during this time. As a result, they will be keeping him there a few more days as we begin this process.

One of the questions that I had was that Dear Son is a hyperutilizer of his medications and I was curious as to how much of the hyperutilization as due to Dear Son vs. the Phenobarbital. They aren't sure so we'll have to wait and see. (Because Dear Son hyperutilizes his seizure medications, it's important to get "trough" levels.)

We made the first changes yesterday and he seemed to have a pretty good seizure this morning. I suspect as we decrease these medications he will become more alert.

As a follow up to a previous post regarding the school bus accident and aide for summer school, I met with the Special Education Cooperative and the School District Representative yesterday and the IEP has been formally changed to allow for an aide for him on the school bus. In addition, they will also request an air conditioned bus for both the normal school year and summer school. They had no problem with either request.

I probably won't post again until possibly this weekend unless we leave the hospital sooner.

Monday, August 13, 2007

Dear Son

Dear Son was admitted to Big Academic Medical Center yesterday for some EEG testing. For the last few weeks, he had not been sleeping through the night and I was up many times with him, and some nights upwards of fifty times a night. At one point, he was not sleeping more than five to ten minutes at a time. He was also getting quite weak, unable to sit up for only a brief period of time in the morning and then would sleep the rest of the day. I paged the neurologist several times last week and we made several increases to one of the medications and at the end of last week, finally slept through the night and unfortunately, the entire next day. At that point, it was decided that we should bring him in for some EEG testing. He has slept through the night the last three nights and perhaps we have the dosage down now so I am not sure what this test will show. At the very least, we need to have more information. I suspect we will be there for two or three days depending on what the EEG shows.

As you may recall, Dear Son's disabilities were caused by the ARX gene mutation. As a result of this mutation, he has no GABA and he has intractable seizures. He does have a Vagus Nerve Stimulator implanted, which has worked well, but is now on the maximum setting.

As a result of his inability to sleep, I have not slept very much, hence the delay in any postings. In addition, I had to terminate the babysitter last week which only added to the mix. It's always difficult trying to find some good, reliable help for special kids like Dear Son.

Dear Son is in good spirits and is enjoying country music (his favorite) while we are there. The television in our room has not worked since we were admitted and it's been a long night without pc access or television. In my haste, I left most of my reading materials at home.

I will post an update as soon as I have some information although I suspect it won't be until later this week.

Thank you for your concern for Dear Son. Your comments always delight and amaze us.

*Photo is of Dear Son as a little boy, prior to strabismus surgery.

Monday, August 06, 2007

New Project: Medicine Tray

From time to time, I create new projects in my free time. In the past month, I created this new medicine tray for Dear Son. It worked out so well, I thought I'd share it with you.
A few months ago, when I started thinking about re-decorating Dear Son’s bedroom, I sat down and wrote out some of my wants and needs. One of the items I wanted was a tray to hold his medications. Currently, when I give him his medications, I place the syringes on a plate and take them to his room. I have to lie a pad down on his bed so that the syringes don’t roll off and get medication on the bed. (I use a separate container to hold his feeding bag and his formula so that wasn’t an issue.)

I looked around for quite some time to find the right tray. I needed one large enough to hold his syringes but light enough to make it easier to carry since I am often carrying his other bin that holds the formula, feeding tube and feeding bag. Many of the ones I saw were more of a breakfast tray, which would have been too heavy. I needed one light enough to carry in one hand. I checked out some wooden ones, some wicker ones, metal ones however none seemed to fit the bill. I saw some with some mosaic tiles on them and some with all sorts of designs. Most were too heavy and too large.

I was about to give up with finding the right tray-large enough to hold all of the syringes and light enough to carry with one hand when I stopped in Michael's, the craft store one day. I was looking at all of the ways they organized their art supplies and looking for some new organizing products for one of my clients. It was there that I came across a small, lightweight, unfinished tray, just perfect for his medications. Usually craft stores drive me insane and I can't wait to get out of them however I had some free time so I decided to really look around. The tray was only $2.99. I took it home and worked perfectly! I painted it white and then used some of the wallpaper that I purchased (I use that as drawer liners to line Dear Son’s nightstand and dresser drawers.) and cut it to fit the tray. It works perfect. And the best part is, it's is amazingly functional. I love using it. I am still trying to find some kind of medium to seal the tray. Until then, I am using parchment paper or aluminum foil on top of it so it doesn’t get messed up. I have thought about getting a piece of glass cut to insert on top of the tray.

After I began using the tray, I liked it even more. I can now prepare his midnight meds right after dinner, crush the pills and set them on the tray until it's time to give them. I add water right before administering. I also use the tray to prepare his lunch time medication that the sitter needs to give. This helps since I don't have to worry about her spilling any medication on the carpet or upholstery.

Picture #1: The empty tray on Dear Son's bed.
Picture #2: Dinner meds and a flush.

Wednesday, August 01, 2007

His World, My World, Our World

It seemed like such a simple thing. Dear Son was sitting in his wheelchair, straining to look around the vase on the table to see the ground squirrel sitting on the edge of my flower pot. I had just wheeled him into the dining room, so I could brush his teeth and wash his face and hands, like I do every morning when I noticed the little ground squirrel on the patio outside. He’s a cute little fellow, who is the first one at the bird feeder in the morning, stealing all the sunflower seeds from the bird seed mix and storing it away for the winter. His antics are watched closely by our cat Wiggles, who sits next to the patio door, for a bird’s eye view of the activities. The ground squirrel is affectionaly referred to as,”Wiggle’s little buddy.”

The ground squirrel has taken a liking to standing on the edge of my flower pot and looking around or sometimes chirping. The cat sits and watches him, with his tail flopping back and forth and Dear Son enjoys hearing me talk about the activities.

As I washed his face, I pointed out Wiggle’s Little Buddy to Dear Son, sitting on my flower pot chirping. His wheelchair had been facing me so I could wash his face and I was moved his chair forward so he could see the ground squirrel.

His eyes struggled to find him and then they locked onto the squirrel and a broad smile broke out across his face. He knew the ground squirrel should not be sitting on the flower pot as he was going to get in trouble. The prospect of someone getting in trouble, is quite delightful to Dear Son. In actuality, no one really gets in trouble, I’ll just talk as if he might. I tell Dear Son that the ground squirrel had better get out of my flower pot or he’s going to get “in trouble.” Dear Son laughs as he knows I don’t like the little ground squirrel dumping the dirt of my flower pot onto the ground hence the smile. He knew I was going to tell him that the ground squirrel had better get out of my flower pot “now”.

It was a simple thing, Dear Son looking out the window seeing the antics of the ground squirrel, but it was more like fifteen years in the making.

When Dear Son was just a baby, I remember distinctly, trying to get him into my world. It was as if there was a giant clear plastic bubble surrounding him where we could see in but he could never see out of the bubble. His world was defined as anything that happened inside the bubble and he tuned out everything that went on in the real world. Probably too much information or too stimulating for a child with seizures.

I remember the early days, when Dear Son was just a baby, lying on the carpet while I read him books. It was frustrating because I could never get through to him. Sure I’d love him and care for him but the reality was, that he never indicated that he was aware of my activities. I grew frustrated and knew I had to figure out a way to connect with him. I began to read him books, in a sing song fashion, always high pitched of sorts and with the same cadence every time. It was often more like a poem or a song than a book. Each book having it’s own tone. I loved rubbing Dear Son’s little feet, removing his socks as I read him stories. On one particular day, I was reading Dr. Seuss’s Foot book to him and I decided to put in his name and referenced his feet. Prior to putting in Dear Son’s pet name, I changed the cadence ending in a sweet sing song voice with the words, “even Dear Son’s feet.” As I said the words, I grabbed his feet and rubbed them and rocked them back and forth. I read this story over and over and over again, night after night. I would spend hours sometimes reading to him, maybe an hour or so at a time. On one particular night, right before I got to the part about Dear Son’s feet, he made a face indicating that he knew what was coming next, the part where I grab and rub his feet. I don’t remember now if it was a smile per se or just his face lighting up but I remember the fact that he was anticipating what was coming next, the rubbing of his feet, and I knew then, that he had memory. That was huge.

With that information, I continued reading to him but also talking to him a million times a day, about just about anything. But the one thing I could never get him to do was to pay attention to things visually, it was always auditory things that he attended to most, mainly my voice.

As the years went on, I remember trying to get him to pay attention to the things around him. If there wasn’t any interaction, he acted as if he didn’t know it was there. I remember distinctly our mallard ducks, Dolly and Donald, that came to our bird feeder every day. They sit right outside our French doors, eating the bird seed, with Dear Son sitting and leaning against the window, his nose pressed tightly against it, and yet, he never even noticed them. I would point out the ducks and talk about the ducks, but when I would call his attention to something to look at, he never acknowledged it.

Over the years, it never changed. There was his world and my world. Most of the time, he would be in his world, tuning out all of his surroundings. It was odd in so many ways, that he would just tune so much out. I always viewed it as sensory overload even when his seizures were well controlled. I would be frustrated at times, with his inability to connect with the outside world, wondering just how I might get through.

Over the years, you could see glimmers of light. When he was four years old, he enjoyed the Christmas tree at school. He seemed to like the bright lights or more importantly, trying to pull on them. He’d reach and reach trying to get those arms and hands that weren’t functional to work. At some point, his crippled grasp would get entangled with the lights. This was success of course.

These were brief pockets of course, reaching out into the outside world or my world. Most of the time, he’d be oblivious to his surroundings, not noticing a thing as I wheeled him onto the little school bus each morning. I always wondered how I was ever going to get through to him and if he’d ever really be present in our world.

Bit by bit, over the years, he began to come into my world. Looking back, I’d have to say the turning point was probably daycare. When he was nine, I moved to a new area and had daycare for him. The kids were much younger, mostly two to five, and he was the only special needs child they ever had, but it did wonders for him. Soon the outside world, full of the antics of the other children, invaded his world. The kids fed him snacks, they played with him, they talked to him, they held his hand. They went where I could never go and made him want to be in our world. He was especially delighted when things went wrong at the daycare, the more chaos the better and if someone was getting scolded, all the better. He loved the prospect of someone getting into trouble. The daycare owner, in her slavakian accent, would tell the kids not to do something, and Dear Son’s eyes would light up, at the prospect of them getting into trouble. Sometimes, he’d laugh so hard, that the owner and all the kids would start laughing and he managed to turn the whole mood into one of laughter. That’s the kind of kid he was.

So while it seemed like a simple thing, looking out the window at the ground squirrel sitting on the edge of the flower pot, it was huge. No sooner than he looked, the ground squirrel jumped off the rim of the flower pot and ran as fast as he could into the yard. Back into his world. And as for Dear Son, he stayed in ours. Sometimes, the simple things, mean a lot.
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