Riding the Waves of Peace....a David Update

April! And the end of April to boot. My how time flies when you are living life!

It's been a while since I did an actual update, so while I appear to be on a blog binge, I thought I might do one today. It's hard to update though when things are quiet and normal because no one wants to read, "Things are quiet and normal!"

I'm really not sure when the last update was so I will just start from January.

In January, things started changing for David. Now I am not a fan of change, simply because I equate it with something negative. Yeah that's me, the cup half empty kinda girl, but the changes we have under gone have actually turned out to be pretty positive.

Also in January, David was still home bound for school, but after some discussion, we decided that since he would be transitioning to the high school next year anyway, and since he was 15, perhaps this was the ideal time to actually start the transition. So....his whole team changed and his new high school team began coming to the house to work with him. Although we (especially me), missed the comfort of knowing everyone and how everything worked at MGS, I knew that it was time I bit the bullet and admitted that my baby, wasn't even remotely a baby anymore. Can I say this sucked? But I knew it was for the best.

David seemed to like the new faces and the new home bound schedule and amazingly seemed to handle it well. After a couple of weeks, we set a date for him to actually start back to school. This time, he would be attending high school. You will never know the mixed emotions I had when I sent him that first day. As I put him on the bus, I had great hopes that this would be the start of something really good for him, but I still felt hot tears stinging the backs of my eyes as I sent him off. It was a mile stone that I only dreamed of previously. Now we were living it.

Well, it seems that the move to the high school was a good choice for him. I think he truly enjoys being with kids his own age and I have noticed that his attitude and mannerisms have matured a bit, even at home. He is not nearly as wild as he was and the reports from the school are that he is acclimated well.

One of the best things about the transfer to the high school, has been the kids. I have had several parents contact me and tell me that their kids have come home and told them that they have seen David in the halls. They are truly happy he is there and very welcoming. A couple of kids have even told me that....they have Davids back, should the need arise. While I don't anticipate the need arising, this has still been very unexpected and very appreciated.

In March David had another EEG. It was a great experience for many reasons. Usually David has to have mild sedation in order to do the test because he likes to move around and is a little bit combative when people come at his head. This then adds a good 30-45 minutes in the office. This time though, David sat in the chair, let them put the wires on and never moved. We were in and out in under an hour. It was wonderful! The best part though was that his results came back NORMAL. This means that his meds and his VNS are currently keeping the seizures well under control. In March he had been almost 4 months without a seizure. That is the longest he had been since he started having seizures in 2008.

David has a flex sort of schedule at school this year. He goes Monday, Tuesday and Thursday. He has Wednesday off as a sort of a recuperation day and Friday because he has Physical Therapy (PT) at Heartsprings in Wichita. This is working out well for him and I think it makes school easier for him. Honestly, it makes my life easier too. This will likely change next year, but for now, it is ideal.

In February, it became apparent that Davids home bound school status and his more inactive lifestyle at home had done him no favors. He had lost some weight due to the fact that he had grown a couple of inches, but more alarming to me was that he was losing muscle mass, which meant he was quickly losing his lower body strength and his ability to walk. His upper body is very strong, but his lower body was starting to fall way behind and with these kids, when they start to fall behind, they may never be able to regain what they lose. David had undergone too much and worked too hard for me to allow him to lose anything.

I was now on a mission to get David back to where he was prior to being home bound. I talked to the doctor and his PT and then I put him on a new food plan. He now eats 5-6 times per day and his diet is full of  healthy fats, protein and a good selection of fruits and veggies. You would be amazed how expensive it is to eat this healthy. My grocery bill has nearly doubled, but the up side is that he has gained 4 lbs and he is getting much stronger. His PT is thrilled at the progress he is making and so am I. We are finally starting to catch up again.

At the end of March, David had his baclofen pump surgically replaced. This pump is in his abdomen and it has tiny tubes/wires that constantly take baclofen (muscle relaxant) to his muscles to keep him from being very tight and rigid because of his cerebral palsy. Every seven years this pump and the wires (if necessary) need to be replaced. This was his seven year mark. It is an outpatient surgery, that went very well. He was back at school within a week. Unfortunately, he was allergic to the steri-strips or possibly what they attached the steri-strips with and the skin around his incision became inflamed and almost infected. It happened all of a sudden and about a week after the surgery. Luckily his school para and teacher were on their toes and caught it. We got him in just as it was starting to blister and get very nasty. It took a doctor appt., antibiotics and an ER trip but now it looks amazing.

Then this month. Hmmm....well....he has had one really rough seizure which landed him in the hospital and then a couple of small seizures. The main (big) seizure he had was the product of him hitting his head when he came up underneath a door knob. He kind of half laughed and half cried when it happened and I frantically checked him for a break in the skin and that he didn't hit his shunt. He seemed fine, but within an hour he had a full on seizure. It earned him an ambulance trip to the ER and an overnight stay in the hospital. Luckily there was not shunt damage, but unfortunately he did give himself a concussion. He was my first kid to get one. Sigh..... What an honor! Since, he has had a couple of small seizures, but they think that more than related to the concussion, it might be that his growth spurt has caused him to outgrow his med dosages. We are watching them currently to see if a pattern emerges. Stay tuned......

All in all.....David is doing amazing. He has lots of energy and he is very happy. He is doing well in school and he is non stop on the go at home. He seems to be comprehending more than he ever has before and his physical abilities continue to expand and grow daily.

Currently the speed bumps are small but when they do happen they are few and far between. We did find out that probably in the next 6-9 months he will have to have a spine fusion surgery as he does have a pretty good case of scoliosis. His is in the lower part of his back and he currently has about a 43% curve. They don't want to do anything until it is 45%. It will be a fairly significant surgery with about a week in the hospital and a 6-8 week recovery time. When he gets it, it should make a huge difference in his posture and his ability to move, walk and position himself. With that in his future, his PT and I are working like crazy to make sure he is as strong and healthy as he can be by then so that his recovery is just that much easier. Yep....another speed bump.

So that about covers it all. Life is good right now. We ride the waves of peace when we can and then pick ourselves back up when we fall. But really....isn't that the way everyone does it?

Until next time.......

The Special Needs Parent Kind of Tired

"I am tired!" No...."I am exhausted!!!" Those are statements that we all say or at least feel from time to time. When you are a special needs parent though, often those words become interwoven in the fabric of our being. Instead of a feeling, it becomes a way of life. If you are one of us, then no explanation is necessary. If you are not.....then no true explanation will ever be possible. No drama...just truth.

As a parent of a special kid, you are not merely a parent of a special kid. Most of us have other children, family, home, jobs, spouses and life in general that take up a full 24 hours in our day. Add to that doctors appointments, therapies, IEP's, ER visits, surgeries, hospital stays and endless phone calls about insurance, funding and the many hundreds of changes that occur in the life of special needs and is there a wonder many of us are down right cranky, sometimes forget to shower and often times have no patience for that which we deem insignificant, unnecessary or just down right bullsh**?

Don't get me wrong, there is nothing more rewarding than being a mother to David. He has changed my life and how I see the world. He is a shining positive in my life. Seeing the world through his eyes has taught me to cherish and appreciate all that I took for granted with my other children. He has taught me strength, bravery and what it means to deal with the unexpected head on, without asking Why? He has also taught me that life is not fair, not everyone cares, not everyone knows (even if they claim to be experts) and that special needs has a learning curve like nothing else in this world.

Today I was talking to a friend and lamenting (yes, I lament at times when I am really tired), about my day yesterday. It began at 8 a.m. with my first phone call and between the 8-10 calls I had to make and return, along with hold times and the always enjoyable...."There is nothing we can do to help you," I was on the phone until after 5:30 p.m. This resulted in a migraine and tremendous frustration, as the end result was that I had no more information after 9.5 hours on the phone, than I had when I started. It was exhausting and unfortunately......just another day in the life of a special parent. Truthfully speaking, there are at least 3-4 of those kinds of days every month and just when you think you have it all figured out and are on the right track, you find out all the rules have changed and you are back at ground zero, starting all over again.

No! I am not complaining, because knowing all that I know now, if I had a chance to do it differently, I wouldn't. I am however, being honest. This is just the way life is and like anything else in life, you learn to live with it and how to make the best of it. Some days, the best is easier to find than others.

As I said, I was lamenting to a friend about the details of yesterday and she said, "You should write a book about all of  this. You could really educate a lot of  new special needs parents." I just laughed. As I told her.....I really know nothing that would help anyone. The truth is, none of us really do. Each child is different and so is the journey that they must take. Special Needs is a wide umbrella that covers everything from cerebral palsy kids like David with a laundry list of other issues, to physical needs, mental needs, behavioral needs, down syndrome, autism, and the list goes on and on. The needs are not all created equally and neither are the paths which child and parent have to go down to get what is best for the child. You are dealing with doctors, therapies, equipment, hospitals, insurance, schools and often because these needs come at huge financial costs, you have to be on lists for funding and both financial and medical help. All of this takes constant updating because there is constant change within the system, funding possibilities and the rules in general. It is a never ending cycle of paperwork, phone calls and often......frustration. More over, you are constantly dealing with conflicting opinions about your child, misinformation and sadly, people that are in positions that should know more than they do. In the end, as a parent, you are often left to your own devices and your own ability to research, ask questions and eventually learn to trust and go with your own gut instincts and your ability to know your child better than anyone else. It can be daunting at times........especially if you are doing it all by yourself.

Perhaps if I could give new parents of special needs kids any advice or words of wisdom it would be this: When you get that original diagnosis, don't let that limit you or your child. Remember, medical science is fluid and what is one way today may be something completely different in 2, 4 or 10 years from now. On the other hand, don't hide your head in the sand and live in denial about your child either. Many times, the earlier your child gets into therapy, has surgery and is hooked up with the right team from doctors to teachers and therapists.....that makes all the difference in the world for their outcomes and their future. Don't cheat them because you can't deal with a diagnosis.

Finally, Davids first physical therapist with Rainbows and then his amazing team in early childhood education, both told me the same thing, and this was the best advice I was ever given. I was told: "You are your child's advocate. You are his voice and no one will ever know your child better than you. You must fight for your child at every turn and never let ANYONE (doctor, teacher, therapist, etc) ever tell you differently." They are words I grabbed onto like a drowning woman on a sinking ship. I took them to heart and have lived by them ever since. However, living these words has not always made me popular or won me friends but I have always known that I have been true to my son and his needs and that is all that is important.  I would in fact say, that this is the one static fact in all of special needs. Regardless of your child's needs.....these words should be considered the foundation for all special needs parents.

No, there will be no "How to be a Special Needs Parent" from me. The fact is, there is no straight line to the finish. As I said, every road is as different as every child. What I will say though, is the next time a special parent seems as if they are a bit cranky, you might figure they have been fighting some lengthy battle for their kid, so maybe cut them some slack. If their hair is not done and they smell like they took a baby wipe bath, they probably did. Just know that bathing was probably so far down on their list of priorities that it simply became expendable that day. And finally.....if they look, act or even say they are tired.....know that it is true and just be thankful that you will never know the kind of tired of a special needs parent. 

Q&A Update

David is a popular guy! Of course we already knew that....but WOW! So I posted a blog the other day and I realized that it was only the second blog about David in 2015. That is really unlike me but there has been a lot going on in 2015 that has kept me busy. Anyway, I had a lot of messages about my latest blog post along with some questions. Yes, I am a bad person and sometimes the only way even family members know what is going on in Davidtopia is when I blog or fb post. So here are some answers and updates.

First of all, health wise, David is doing well. He has had some rough patches throughout the year and he started having some weird seizures this summer, but for the most part.....he is healthy.

No....we do not have definitive confirmation that David has Autism. His neurologist simply stated that he has many traits (and seems to be developing more as he grows older) that are on the Autism spectrum. However, that does not mean he is autistic and the only way we will know for sure is to have him fully tested. That is in my future plans to have him fully tested.

David is now 15 years old. Yes...it's true. He is a full fledged teenager with full fledged teen aged attitude. I am thankful everyday considering 15 years ago I didn't know whether he would ever get out of the NICU.

Yes....David still has seizures. There is really little known about seizures, especially in kids like him. He had them in the NICU along with several strokes, but once out of the NICU he never had another seizure until 2008. That in itself is strange in that he didn't have them all along, but he didn't. The 2008 seizure was a febrile seizure brought on by a temp from a virus he had. It seemed to be the catalyst for the start of many more seizures to come. In the years since he has had seizures, he has had many EEG's with different result. Some of his activity has come from the right side, some from the left, some all over and there has even been one EEG that showed no seizure activity at all. It stumps the neurologist and makes it quite the hat trick to get his seizure meds correct and keep them stable. Med changes in our home are no fun and come with a great many side effects that sometimes take us months to work our way through. That is on my end. I can't imagine what they do to David on his end. We have also learned that his seizures can be effected by lack of sleep, stress, change, growth, hormones and illness and those are just what we know about. There could be other things that we have yet to discover. The neurologist has also told us that just as quickly as his seizures started, he could also just grow out of them. On the other hand, he could suffer with them his entire life. So as you see.....seizures continue to keep us guessing.

Yes....David is currently doing home bound school. No....I have no plans to make this permanent. This is to take the time to get him sleeping properly again as well as getting his seizures under control. There will always be change in Davids life and to some degree he will have to learn to live with change, but those of us in his life will have to learn how best to introduce change so as not to throw him into a tailspin. I knew change was an issue for him but I had no idea to what degree or I would better have been able to prepare the school, his teacher and others in his life. I have been doing a great deal of study on change in kids like David and how hormones and even diet can have an effect on brain activity, seizures and how they handle change and life in general. Some of it makes a lot of sense and I plan on trying some things to help David handle the world better. He is way too social and way too smart to never go back to school again and I want way more for him than to simply spend his days at home.

So yes....David is doing well trying to adjust to his new normal. Last night I thought we might be dealing with a nasty stomach bug. I had it and I was hoping it would pass over him, but he spiked a fever and started acting like he felt pretty bad. I did an all niter making sure if he were to throw up I was right there so he wouldn't have a chance to aspirate. Luckily it never came to that and by early this morning his temp had broke. He slept for awhile and then got up raring to go. Shew.....bullet dodged!!! Now ....we will just take our vitamins and enjoy the Christmas season.

There you have it. I hope I have updated everyone. Things are about to get hectic in the next couple of weeks, so if I don't manage another blog in 2015, David and I wish you a very Merry Christmas and an amazing New Year.

Stumble, Fall.....Move Forward

So it was blatantly and excruciatingly brought to my attention yesterday that some who truly care about David, maybe even need to know about what is going on with him and follow his progress, only get their information from facebook or this blog. Looking at the last date in which I blogged, it shows that I have really fallen down on the job. I haven't done a whole lot better on facebook. Sorry.

Much has happened over the course of this last year, which will take more than "a" blog, but for today, I will catch you all up on the most recent events in Davids life.

As a parent of a special needs child, it can be overwhelming at times. I have had people tell me they don't know how I do it. I always say, "You do what you need to do for your child, regardless of what that may look like to the outside world." The truth is though, sometimes parenting David can be difficult and daunting because either A) you have no clue what you are doing or B) you have a clue but prefer to live in denial. It then comes down to knowing your child and going with your gut. Of course....isn't that what parenting any child comes down to?

David has many diagnosis that cause him to fall under the "special needs" umbrella. There is everything from intellectual/learning delays to muscle issues (Cerebral Palsy). Sprinkle in seizures, Hydrocephalus and the ever changing physical issues such as lower immune system and now kidney stones...and there are days when even after 15 years, I want to crawl back under the covers and try to remember a time when the term special needs had no meaning in my life. Unfortunately, hiding out is not an option and my reality...our reality, is much different than most. That is why I put on my big girl panties and remember that before special needs came into my life,  I was a much different person; in fact, I was a  person that I would never wish to be again. David is a gift that has changed my life for the better in so many ways and to give him anything less than my best every single day would be me failing as his parent. So we move forward...sometimes stumbling....maybe even falling.....but always forward.

So yes, I still vacation in denial from time to time. It is because of this that I have learned to keep a lot of notes on David. I jot down everything from small things like what his favorite piece of clothing seems to be at the time, to behaviors, health and interactions with other people. These notes often help me to piece together the puzzle that is David and his particular form of specialness. They come in especially handy when I am not seeing the big picture....even when it is staring me directly in the face.

When David was very young, they tested him for autism among many other things. It was decided by all involved that he was definitively NOT autistic. Since I knew absolutely nothing about autism and had no desire to have to stuff more information into my already overstuffed brain where David was concerned, I was extremely grateful that we had dodged this particular bullet and we moved on.

About two years ago, after David had a major hip surgery followed by a broken leg, he went back to school. It was at this time, I started to see David resisting change. He went back to a teacher that wasn't all that excited at the prospect of him coming back (let's face it.....the boy comes with a lot of baggage) and she I don't believe was equipped to handle any of it. She did nothing to make his transition back to school easy and in fact, she did her best to turn his school world inside out. David began having a lot of seizures and was having trouble focusing at school as well as coming home and taking hours to decompress. At the time, I just thought that it was so much happening in his world (surgery, hospital stays, pain, recovery and trying to get his life back....not too mention the school issues) that his mind and body were just dealing with way too much. It brought the not-so nice side out of me and after a few go rounds with several at the school, Davids school life was brought back to normal and the seizures quit and David went on to recover nicely. Problem solved?! However, I did start to see new little idiosyncrasies in him such as a few obsessive compulsive (OCD) issues. In the ER or hospital, his bed rails HAD to be up at all times. It was literally a battle if the rail had to be down for a procedure and one doctor commented that he thought the rail being down caused David more stress than the IV stick. He wasn't wrong. Then I noticed that David had to hang his Spongebob pillows by their arms, in a certain order. And then there was change..........

I started watching David and realized that he is very smart. He seems to have an inherit ability to tell if a change is temporary or permanent and I can tell this by the way he acts. We can go into a new place and he seems to be able to tell if this is just a place we are visiting or if it is going to become a regular thing in his life. If he senses it will be regular, he usually has immediate sensory over stimulation and starts acting out, clapping loudly and even trying to leave. He knows the meaning of an EXIT sign and will look for one and start pointing to it. However, if he senses we are in a new place and then gone, there is little to no reaction.

It is the same with people. He had not seen one of his older brothers for a couple of years. When he saw that brother again and the brother kept coming around, David started having seizures and he would either not come around the brother when he was at the house or he would immediately over stimulate. It took me awhile to put two and two together and when I did, we lessened the visits and the amount of time during each visit, until David became used to it. He knew his brother was going to be a permanent person and he had to get used to him. Then again, David can meet a new person on the street, at a store or even in the house and he seems to know they are only there temporarily. It is crazy, but putting all the pieces together made me realize that David's ability to handle permanent change was not what it used to be. And if you make the change sudden.......fugitaboutit. It is just too much for him.

Last year was a different kind of school year for David. The old teacher was gone and there was change. His new teacher unfortunately wasn't there much but the substitute who helped her out, was a veteran sped teacher who knew her way around a classroom and sped kids. She was amazing and although he did initially have a few issues at the beginning of the school year, he seemed to enjoy school. It was also a year that David was sick a great deal so he didn't get to spend as much time at school as I would have liked for him to. Walking into his classroom was always fun for me because the kids always seemed to be interacting and having their own fun. There was a sense of organized chaos that seemed to both entertain and teach the kids without over stimulating them. The teacher made the environment laid back and comfortable and you could tell that staff and kids responded well to all of it. Gone were the days of the kids being cubby holed and unsocialized. They were a real classroom and I was overjoyed.

This year, there was change again. A new permanent teacher was in place and with that a new atmosphere and some other new people. The year started much like last year ended. The room was bright, fun and inviting and the teacher had even encouraged each para to make their students area as fun and comfortable as possible. Of course Davids was adorned in Spongebob and the first time I went in to see it, David excitedly pointed to all of his Spongebob accessories. There seemed to be a good mix of fun, learning and comfort in a relaxed atmosphere. I was beyond thrilled.

Then, about a month or so ago, David started having seizures again. He went from a couple per month, to two or three per day. I started noticing that he didn't want to get out of bed in the morning and he would fight me on everything from putting on his clothes to even eating breakfast. In the evenings he was coming home agitated and sometimes even aggressive and it would take me a good two hours to calm him down. Then he quit sleeping at night. Some nights he would sleep maybe a couple of hours, but many nights he would never shut an eye. Guess who else never shut an eye?

I was confused and questioning everything from his age to hormones and worried about everything from him gearing up for a really big seizure to the possibility of a shunt malfunction. I called the neurologist and was told to just keep an eye on him and of course keep taking notes. Then one day, I had to go to the school for something and I walked into his classroom. It hit me like a ton of brick. Davids classroom was now dimly lit....almost dark. Gone were all of his Spongebob accessories and all that was left was a Spongebob sheet on his cot, and his usual spot had been moved clear across the room. I knew immediately why David was having issues. It was the change and for him I am sure it seemed drastic and permanent. I asked the teacher "What happened?" She explained that she felt that the room had been over stimulating and that she had plans to make it a sensory room and wanted it to have a more calming affect for the kids. I completely understood that and I think it will be amazing, but for David....it was just too much change.

At this point I was beyond sleep deprived and both Davids mental and physical health were weighing heavily on me. Obviously the change was too much on him mentally but his lack of sleep was beginning to worry me. I was really afraid he was going to get worn down to the point of getting sick and that would make the whole situation go from bad to worse. Sleep deprived or not I had to figure this thing out and make a plan that was best for David.

I completely understood/understand the path that Davids teacher is taking with the class. I think her ideas and plans are going to be amazing for the class as a whole and that is and should be her goal. However, it was not working for David and while the class as a whole is her priority.....David is mine, so I began trying to figure out where to go from here. I kept David home from school because I was determined to get his seizures under control and get his sleep habits straightened out. The first day I kept him home, he was agitated. Now "I" was messing with his schedule and bringing on more change. He didn't have any seizures but you could tell he didn't know whether to play and be happy or to be mad and ornery. That night he didn't sleep at all. The next day I decided that he simply didn't know what was going on and maybe I needed to sit down and explain it to him.....so I did. I told him he was staying home from school for a while and I wanted him to feel better and to get some sleep. He immediately got up and played with his toys for awhile, then ate and then.....laid down and went to sleep. Other than waking up to eat, he slept for almost 20 hours straight. Each day he slept better and his attitude was oh so much better. Most importantly though.....there were no more seizures. I knew I was on to something, so I started doing some checking and learned that I could do home bound schooling for David where his teacher designs a lesson plan and his para comes to the house and implements the plan for a few hours everyday. All I had to do was get a doctors note. As luck would have it.....we had a neurology appointment the very next day.

On telling the neurologist all that was going on, it was mutually decided that changing David's seizure meds was a poor option at this time, mainly because his therapeutic levels were all within normal range and that it was felt his seizures were caused by environment, which brought the neurologist and I to a conversation I didn't want to have.

Over the years, what they call the Autism Spectrum, has widened. They are finding that many sped kids have behaviors that fall into the spectrum and if a kid has multiple behaviors in the spectrum then the possibility of an Autistic diagnosis becomes great. David has several, not the least of which is his OCD and his progressive inability to handle change. The doctor agreed that home bound schooling was the best option at this time. He also suggested that David have some further testing for Autism.

I walked out feeling many emotions. I so didn't want to think about a new diagnosis, even one that made so much sense. On the other hand, knowing that we weren't going to have to go through new med changes and the side effects that go with that and knowing that David would have as much consistency and as little change as I can give him made me feel so much better for our current situation.

So yes, I talked to David about all of this. I made sure he understood the situation as best he could. We made the dreaded IEP changes at school and may have to do a bit more tweaking to get it right, but yesterday was his first day home bound. It went beautifully and it was fun to get to see the school side of David that I don't normally get to see. Home bound school was 2 hours yesterday and by the time it was over, he was tired. I wondered if  there would be side effects from "this" change. So far there have been none. We had no seizures and he slept clear through the night. Hopefully the stumble of the past few weeks is behind us and once again......we are moving forward.

So there you have it. There is more.....much more to Davids story and I promise to try and do better in the future at keeping up. And before I end this today, I would sincerely like to thank all who have helped us in the last couple of weeks including, doctor, his teacher, para and school staff who have gone above and beyond to help me....help him. For this....I thank you all!

New Year Update!

Waiting for a David update??? It has been awhile. Life got incredibly crazy or maybe.....I got incredibly blog lazy?! I prefer to think it is the former. Life just got crazy. At any rate, things are okay right now.

Before Christmas, David missed a lot of school. First it was seizures, then it was the bitter cold and then there were the fevers. During the Christmas break, we managed to visit our local ER about four times. These were due to his foot, hip and a really nasty rash. The last trip I think, exposed us to the flu or some equally disgusting germ and so as school was back in session on Monday for the new year, David has remained at home.

If you remember that this time last year, David had undergone his second hip surgery in St. Louis and we were well into a hellacious four months of ambulance rides, ER trips and hospital stays. Once again David managed to go from zero to septic in the blink of an eye and I sat by his bed side wondering if he would be okay. This year, I plan on much less ER/hospital time and much better health.....present time excepted.

I am the worried mom who is erring on the side of caution and not sending David to school when it is 5 degrees out with a 40 mph northerly wind. Other than the ER trips David stayed home during the Christmas break and stayed as far away from germs as possible. Can I protect him from everything? Obviously not as he has already succumbed to a stomach bug (not sure who or what to thank for that one....but I'm thinking Z) and now he is sporting a really hacky cough. Part of me wants to try and send him to school tomorrow, but........ we shall see.

In the big scheme of things, David seems to be progressing well. His hip issue sort of freaked me out as he couldn't or wouldn't put any weight on his leg and was even whimpering with it. After x-rays to make sure there was no break (after all....we know he is not above breaking things) and numerous blood tests to make sure his body wasn't holding any infection, it was decided that he had simply pulled or twisted his hip and within days, he was back to normal.

Unfortunately I have learned that with a kid like David, sometimes you can't just sit back and take a wait and see attitude. That is when infection and sepsis can take hold. From his hips to his ankles, David is nothing but metal plates and screws. Because of this, I am always conscious of the fact that his hardware can get infected. Thus, I am always on my guard.

So far, we are just hitting and clearing speed bumps and I hope that we are in for a lot less crazy this year and a lot more happy/healthy time. In order to achieve that.....I will be ever vigilant in making sure that I take the necessary precautions to guard his health,even if that means keeping him home at times.

Christmas was really good this year and David was much more in tune with it than in years past. He loved the tree and would sit and watch the lights for hours. He was not particularly pleased when I took it down for the season. He also was really happy with all that he got for Christmas. He got electronic drums, electronic drum sticks, cars, blocks and more Spongebob stuff. Since Christmas he has clocked an awful lot of hours in his room "playing". It has actually been a joy to watch his interaction with everything.

The past year was not particularly fun for any of us but especially not David. It is my hope that 2015 is a new year, with new hope and a lot less ER/hospital time. I also hope to do better about keeping everyone up on things in Davidtopia.

Happy Tuesday everyone!

Seizures Suck! An Update

David was born with two major issues which the doctors felt from birth on would dominate his life. The first was cerebral palsy (CP). CP affects his muscles and his mental development. The other was hydrocephalus. Being hydrocephalic means that the fluid does not drain from his brain properly and thus builds up. If left unchecked it causes swelling on the brain and eventual death. Once this was discovered in David, a VP shunt was put in behind his ear to drain the fluid from his brain into his stomach where it is absorbed. The risk here is that his shunt can malfunction, clog or become infected. This has to be monitored and if any of these things happen, then he has to have immediate treatment in the form of antibiotics and a shunt replacement.

So you would think that these two conditions would rule our lives. They don't. They never have. In fact until David was 8 years old, we lived nicely watching David grow, thrive and learn. He was on no medication except for the occasional ear infection and we lived life just as most others do. What changed everything and turned our world upside down happened on January 21, 2008. That was the day I woke up to find David on the floor of his room. He was pale, lifeless and completely unresponsive. As I sat there waiting for the ambulance to arrive and holding him, praying that it would not be the last time, I wondered what the heck what was going on.

Once the EMS arrived, they told me he was post seizure. I had no idea what that even meant. As they worked on my baby and I stood by helplessly, I wondered how this had happened? Once in the PICU, the doctor told me that David had suffered a seizure and when I found him, he was on the other side of it or "post" seizure. How long the seizure was I have no idea, but he was running a fever so they surmised that his fever had probably jumped quickly sparking a febrile seizure. He spent 36 hours never opening an eye (likely do to the adivan he was given post seizure).

At the time we didn't know if this was a one time deal or if this was something new we were adding to our lives. The doctor put him on a seizure med and said that we would watch him. Once I got him home, I did what I do best. I panicked! This was new territory for me and it had made a sneak attack on my son and my peace of mind. We were good for about eight months and then another one hit. Again....another febrile seizure and I got to see it from start to finish. This gave us another PICU stay and caused me to face the fact that we might be dealing with more of these.

All was good after this until I started noticing, usually at night right after he fell asleep, that he would startle awake; eyes huge, grinding his teeth and making "oooo" noises. These episodes were short lived, maybe 30-45 seconds, but they were becoming more frequent. His pediatrician thought they might be acid reflux episodes and so he was put on reflux meds. They didn't stop, so I went to his neurologist with it. He wasn't sure what it was but thought an EEG might tell us something. Sure enough....the kid was having seizure activity all over his brain and these were mini silent (sort of) seizures. It was now definite....seizures were going to be a new part of our lives.

Since that day and the diagnosis of a seizure disorder, seizures have been the main ruling force in our home and in our lives. Here is what I know six years later about seizures and David's seizures in particular. In 2/3 of all seizure disorders, there is no known reason for them. They know that febrile seizures are brought on by a quick raise in temperature but the temperature does not particularly have to be high. A raise from 98.6 to 101 in a short period of time can bring on a febrile seizure. Febrile seizures can spark other seizures, but don't always.

Some people can have one seizure in their life and some can have many. Seizures can have something to do with hormones and at a certain age (late teens) simply stop. Seizures can be controlled with medication BUT when a child is constantly growing, certain meds either become ineffective or the child continually outgrows the dosage, and because of this, constant bloodwork is necessary. Sometimes seizures can be controlled on one med, but in many cases, it takes several different kinds to work with each other to control the seizures.

In David's case, his CP could be a part of his seizures, but because he started them later in his childhood, it may have nothing to do with it. One day David's seizure may simply stop or......he could have them his entire life. His seizures are not typically life threatening, but unchecked they could cause him to injure himself or choke. His seizures also tend to cause him to get more aggressive and agitated when he starts having a lot of them. Some of the side effects of his meds can cause the same issues, so he is on other meds to counteract these side effects. David currently takes 6 different meds and he takes meds 3 times per day. His meds cost over $2000/month.

A couple of years ago, David was implanted with a Vagus Nerve Stimulator or VNS. The VNS is in his chest with wires running to his vagus nerve where seizure activity I guess....tends to happen. He carries a high powered magnet with him wherever he goes. The VNS is a battery powered device that is on for 3 minutes at a time and off for 1 minute. This can be set for different settings but due to his current activity this is his new setting. In case a seizure slips through at that 1 minute interval, that is when the magnet is used. If you swipe it over the device when the seizure starts, it usually lessons the seizure time by about 80%. It was our hope that with the VNS we could cut back his meds, but so far that has not been a possibility.

Dealing with seizures I think, has been harder on David than his CP or hydrocephalus put together. The exception to this maybe his surgeries to walk. At times when his seizures are bad, I can see it frustrate him and wear him down. They have had him in the ER and hospital dozens of times and they have kept the family on vigilant guard waiting for the next seizure episode. To put it mildly.....seizures suck!

All this being said, if seizures are the worst of what we have to deal with on a day to day basis, then life is good. David is due for another EEG next Tuesday and then we should know more about his latest outbreak.

The thing about seizures is that they are brain related and truthfully, any good neurologist will tell you, what they actually know about the brain wouldn't fill a thimble compared to what there is to know. Slowly the puzzle of the brain is being put together, but for people like David, it isn't soon enough.

One new possibility that even our neurologist is starting to talk about is marijuana treatment. On studying it, it really does seem to be causing some remarkable results. In the treatment it is usually an edible and it has no hallucinogenic properties. What they are seeing with this is that people whose seizures can't be controlled any other way, are being controlled by this treatment. It is still in the experimental stages but the possibilities for this being a break through drug for seizures are looking really good. No....I will never be a proponent of pot for casual use(seen too much to go there) but there is no denying the health benefits of this substance.

So here we stand. David is doing well. His outside therapy has helped him immensely and everyday he uses his legs more and more. He is walking distances with his walker and kicking everything in site. He is a teenager with attitude and he loves to laugh and socialize. I would say he is right on track with every other 14 year old in this respect.

Yeah, seizures suck, but in the big scheme of things, David is doing great and we as a family are blessed! 

A Truly Amazing Life

Life in Davidtopia is very busy right now. He has physical therapy (PT) two times per week and water PT once a week. We are up before daylight to get him to the west side for his PT's and as always, there are hiccups with insurance, but he likes his therapy and so far, he seems to be gaining from it.

For those of you who may be just tuning in, David has cerebral palsy (CP). His particular type of CP was brought on by a premature birth which resulted in a grade 4 brain bleed and a host of other issues. His CP is both physical and mental, with the physical part affecting his lower extremities (hips, legs, ankles) much more than his upper body. Early on he was little and light and he walked really well with a walker, despite the tightness in his muscles. As he grew though, he began to have issues holding his own weight up and being able to have stability on his feet. When he was 12 years old, we learned about Shriners Hospital in St. Louis and David was sponsored by a local Shriner to go and get checked out. There we learned that Davids hips were really bad and that not "if" but "when" his hips gave out, he would be in constant pain for the rest of his life. The only thing to be done was a long and painful surgery to repair the hips and also to fix the muscles in his legs and knees. Everlasting pain vs. surgery? It was a no-brainer. He had the surgery. Unfortunately, the surgery over corrected the problem and within a year, he had a new problem. He couldn't even stand because his hips had spread out to the point that his feet crisscrossed. Strengthening PT was impossible because he simply couldn't stand. Now, nine almost ten months ago, David had the hip surgery again. This time they pulled the hips back to center. In April, he stood with straight legs for the very first time ever. In September, he was okayed for intense PT, as his hips had healed and his bones had strengthened to the point where he wouldn't hurt himself. And now you are up to speed!

David has the desire and the drive to walk, now he just needs the strength and as far as PT goes, we still have mountains to climb. What is the saying...."You have to crawl before you walk and walk before you run." Well David is literally at the crawling stage. Now he is working on the walking. He is working on strengthening his legs, hips and his entire core. Even though his upper body is a thousand times better than his lower body, as he grows, there is more of him to support and the surgeries have weakened his upper body a bit. He is working to regain that strength and move forward. At PT, he works on supporting himself and doing fun things like playing ball, kicking the ball and reaching for things. He also constantly works on sitting/standing which for you and I would be similar to squats. The sit/stands help to build muscle and prepare him for walking.

The pool therapy is an amazing strengthening tool as he is constantly kicking in the water to keep himself moving. On his own in our pool he started getting stronger just being out there playing. It is because of the pool that he started kicking outside the pool. Before that, he couldn't lift his own legs to kick. With the targeted pool therapy, I am hoping that the change will be amazing.

When not at PT, David does daily routines at school of sitting on an exercise ball to learn trunk control and strengthen his core as well as he does stretches to keep his muscles in shape so he doesn't lose anything. He can actually take off and walk with his walker, but because the strength isn't there yet, he tires easily and his muscles will begin to shake. Sometimes it is hard to watch, but then I put it into the perspective that David is like an athlete training for a marathon. There is a lot of hard work, pain and effort that goes into that training, but when the finish line is crossed, it is worth every second of that painful journey. I feel that when David crosses the finish line, we aren't going to remember the surgeries, the long and hard recoveries, the sleepless nights, the pain or the endless PT. All he or I will be thinking about is that he did it!!!! He is walking!!!! It will all have been worth it for both of us.

And speaking of growing.....David turned 14 years old on Sunday. He is about 4'8" tall and he weighs about 80 lbs and he is all teenage boy. He got several gifts, mostly cars as he is in love with cars, but his favorite gifts were the Mylar balloons he got. Three guesses why. They have Spongebob on them of course. So far they are holding up under his constant handling but I fear they are not long for this world.

Life continues on here in our humble abode. We keep doing our best to move forward and kicking the obstacles out of the way and so far, David appears to be on track...... for a truly amazing life.