Roots and Wings

 

A little over twenty-one years ago, I was thrust into a world where even if you see it coming, you can't prepare for it and if you don't see it coming, you can't even imagine surviving it. I had a baby that was only 27 weeks along gestationally and due to a placenta previa, his birth was both traumatic for him, and also life-threatening for both of us. To put it simply, both his and my guardian angels were working overtime that night and I am sure, they had to call in reinforcements. His entrance into this world, however, touched, and dare I even say, changed, all who worked on him and loved him, and all these years later, he is still having that effect on all who work with him and love him. 

Of course, I am referring to the Incredible Mr. David.

Funny thing, but when you are focused on certain things in life, and I mean truly focused, you don't often have time to see the forest for the trees. You become pretty obsessed with where your focus lies, and you can't hardly see anything else, including the passing of time. I just realized the other day, that for the last 21 years, I have been extremely focused on an almost single-minded in the upbringing of David, and I have not properly prepared myself for him to hit one of the biggest (and maybe for him THE biggest) milestones of his life. David is graduating from high school tomorrow, and I am so not prepared.

 

Yes, of course, I knew in theory that graduation was on the horizon, but I never focused on the reality because there were just too many variables to allow myself the inevitability of such a milestone. Instead, I stayed focused on the day-to-day, especially when the day-to-day often held challenges that might impede David from getting to that coveted milestone. 

For those of you who know and have followed David's story, there have been no guarantees in life for David since he took his first breath. For those of you just meeting David, I invite you to go back and read the past blog pieces here. It has been a bumpy ride at times. In essence, though, David was born extremely premature with many health issues. He was diagnosed with Cerebral Palsy and a list of lifelong chronic issues that had the potential not only to hold him back but also to take his life at any time. His rather rough entrance into this world, ended him up in the NICU for five months, each day more precarious than the next. So many times we were warned that the likelihood of him surviving, let alone going home was nil. Miraculously though, he did come home. 

Not long after David came home before he even got to truly know his dad, we lost his dad to a brain aneurysm and from that moment on, it was me and only me left to take care of him and ensure that he not only continued to survive but also to thrive, and over these last twenty-one years, that is all that I have focused on. Some of my efforts have been better than others, but through it all, here we are today, on the cusp of him becoming a high school graduate. It is almost overwhelming to look back and see where we started and to now gaze upon where we are in this moment. 

Through the years, I have had so many people say, "Lisa...look at what you have done," or "He wouldn't be here without you." The truth is though, that while I may have given him roots, so many others have helped him grow into the strong young man he is, and let's not forget David's own tenacity and strength. He started fighting the moment he was created and to this day, he has never stopped. 

The day I lost my husband, I thought I had lost everything, but most especially, my rock and support where raising David was concerned. A year later, I lost my mom (David's biggest fan next to me) and it was then that I felt truly alone. How had God entrusted such a soul as David with me, and left me to do it all on my own? Of course, He had not left me to do it alone. I soon realized that I had friends who would become family, along with therapists, doctors, and even complete strangers who would become friends step in and step up at times when I needed them most, whether I realized it or appreciated it at the time. 

David started in our local primary school at 3 years old. At the time, he pretty much just laid on his back and other than some rudimentary attempts at crawling, he really didn't do much. By the time he left the primary school, he had a wheelchair, a walker, and he was walking all over the school and had begun to learn to communicate. This was all in great part due to his teacher Brenda Martin, his speech therapist Micki Mason, and his Physical Therapist Valerie Wondra, not to mention all the amazing para's who worked tirelessly with him (Diane Ellis, Terri Lander, Rita Snider, and so many more). 

Once out of the primary school, we had our ups and downs with school, mostly because from day one I was told that since David was non-verbal, I was his voice. I had to make sure his needs were always met and that his voice was heard, and I took this job very seriously. Because of this, I was not a favorite of every school administrator, nor every teacher or para that crossed his path. There were times when I would walk into a school and see a teacher or admin who would literally turn and walk the other way to avoid me. Through it all though, he once again came in contact with some amazing people including his long-time para Niki O'Daniel, Sandy Phillips, and Cindy Ramsey, just to name a few. 

It wasn't until David hit high school though, that the changes really began. He was originally blessed with a teacher named Mallory Ashworth. Mallory met David daily with joy and was constantly willing to go above and beyond to help David succeed, whether this meant getting extra training or going to a P.T. appointment with us. She was amazing and she will never know the gratitude I have for her care and love of David. Then, a year into high school,  there was a complete change over in David's teachers and para and boy did he hit the jackpot. He had Alisa Pittman as his teacher who refused to see David as anything other than amazing and capable and Tony Shrubshall as his para who has given him the ability to soar in both the classroom and in life. Oh, the places he has gone since that day. He has learned to be so much more independent, and self-sufficient and he is also getting pretty proficient at sign language. He also has other amazing staff working with him such as Carol, Micki, and our beloved friend and bus driver, Bob, just to name a few. Without all of these people working so hard to help him succeed, I simply don't know where we would be.

 

Let's also not forget all of you who read David's Facebook page and mine, as well as this blog, who pray for David, cheer David on in all of his accomplishments, helped us to save his home, and most importantly, those who see him as the amazing individual he has turned out to be. 

So, as I said, I have given David roots, but all of you have given him the wings to fly and become the man that no ceiling could ever hold in. 

Now, tomorrow, I will go and watch my youngest, the focus of my last 21 years, do something that I dare not even dream he could or would. Tomorrow, David Elam will graduate and suddenly, the woman who always remains stoic and unaffected (except in a crisis), is about to fall apart. I am overwhelmed looking back on the journey and reflecting on all who have been there along the way, both through the amazing and the not-so-amazing. I find myself unbelievably grateful and even a little terrified as both he and I will be starting a new chapter in our lives. 

Thank you all for your kindness, prayers, understanding at times, and your constant ability to let David and I know that we are not alone and that we not only have friends and family behind us but also a wonderful community of individuals who always seem to have our back and cheer us on regardless of the current crisis. Thank you just doesn't seem adequate....now does it? 

Fear not, there will be more. As I said, we will be moving into a new chapter, with new stories and insights and I will keep you posted both here and on Facebook. So until next time..........

HAPPY GRADUATION DAVID!

So How is David?

People ask me all the time how David is. There is an added interest since 2018 was a pretty interesting year for him. Between almost losing his home and his major spinal surgery, people are curious and rightly so.

David started back to school this year in his wheelchair. While the surgery was blessedly easy and his recovery was smooth, getting back to baseline has not been as quick as I had hoped. Much of this could be because I had the wrong expectations having never been through this particular surgery before. Don't get me wrong, he has made great progress, I just didn't realize how long "back to baseline" could take.

Before surgery, David was using his walker almost exclusively at school with only the occasional wheelchair ride to and from school and when long distances were involved. This was amazing except for the fact that because of his spine, his body alignment was horrible and the more he walked, the more he threw out his hip and undoubtedly was causing himself a great deal of pain. Since his surgery though, getting back to walking with his old walker has been an uphill battle. Now that his spine is so straight, it pulls his already tight hamstrings even tighter. This makes walking for him with the walker he was using, almost impossible. He also can no longer get down on the ground and crawl anymore. As bad as his crawling was for him, it actually did keep certain muscles fairly loose.

When his actual walking PT began, we quickly learned that about the only thing his old walker was good for was to help him strengthen his legs by using it to hold onto while he would stand up and sit down. The problem was, he knew he had lost strength in his legs and he himself did not trust them, so he fought the "sit stands" like the plague. Blessedly his physical therapist was able to help get him a new walker that is much more adaptable to his current situation and can be made to accommodate any changes that come as he gets less tight and builds more muscle.

He was also able to get back on his bike, something he dearly loves and which helps him a great deal. Unfortunately the bike was an old bike, which was not in great shape to begin with and since his surgery, has been more difficult for him to use. Still he gives it his all and it gives him a lot of joy to ride it.

Since starting back to school this year, it has been one of David's healthiest years of all time. (Yes, I am looking for a big old piece of wood to knock on as I type this). So far his only hospital time has been as an out patient back in October for his Botox injections and he has had "the crud" a couple of times, but for the first semester he has only been gone about 10 days so far. By this time last year he had been out about triple that. The fact that his seizures are very well controlled now (only about three since last April) and that we work on his immune system through the foods he eats, seems to have made a huge difference in his overall health.

In September, my baby boy turned 18. It was so bittersweet to celebrate this birthday with him. The sweet part was that this young man who left the womb at 2.2 pounds and was only 12 inches long and not expected to make it out of the NICU, turned 18. It truly was amazing. He is basically in good health and other than his chronic issues, he does very well. The bitter part was that my baby was turning 18. It truly didn't seem possible and there was a bit of sadness that his dad and his Grandma Mary who both adored him, were not here to see this bona fide miracle take place. They would have been just as excited as I was.

So a new school semester has started and my young man is still working on getting back to baseline before the year mark of his surgery. He and I work on his core daily and his leg strength. Weekly he sees his amazing PT and his school and teacher are so good about giving him a workout everyday. It is a team effort but it seems to be working. He will also be due for another Botox injection in February which always turbo boosts his abilities.

This past year has been a year of upheaval (more for me than him since I didn't really allow the whole house thing to touch him) and a year of fighting through surgery and recovery. It has also been a year of change as no matter how much I wanted to keep everything absolutely the same for him post surgery, some things were just not possible. That being said, he has adapted fairly well for the most part as he seems to understand that since his surgery, things are just a bit different.

Going forward we will continue to work on his strength, his muscles and his ability to walk. We are also working on his communication and his understanding of when it's appropriate to be loud and when we must be quiet. I really would like to get him to the point that I can take him to church again. That particular outing hasn't worked well in several years, but I am hopeful.

Currently we have no expectation of anymore BIG surgeries. He will continue with his Botox and from time to time he will have to have his shunt, VNS and Baclofen pump updated, but other than that, if the seizures continue to play nice and his immunity stays strong, the rest of this school year looks to be one of his best ever.

Through all of this, we never forget the people who helped us keep our home, those doctors and nurses and EMS people who give their all each time David is in their care, his amazing physical therapist, his equally amazing teacher and his para's past and present who have given their time, care and love to my special young man. Without all of you, we would be nowhere close to where we are today. We ask for prayers for a continued amazing school year and David and I wish you all a wonderful 2019.

Until next time.......

.....And We Survived

Facebook has this "memories" app and each day it takes you back to whatever date it is, each year you have been on Facebook. You can see your old posts and pictures and sometimes it's kind of fun. Lately though, my pictures and posts have been about David's surgeries, hospital stays and ER visits. Apparently this time of year is usually a busy one for us.

Looking back though, there are so many memories of my sweet boy and so many times when I can't believe we all survived that particular time. Honestly, as a mom, I can't believe that I have made it through all the crisis in David's life and am still here to tell about it, but that is what Special Needs Mom's do.....we survive.

Special Needs kids with chronic conditions are often plagued with poor immune systems and are medically more fragile than the average child. Lungs, heart and kidney's often cause secondary issues to their primary conditions. Add into that the medications that many have to take for muscles, anxiety, seizures and a plethora of other conditions and their little bodies are just an ER visit waiting to happen. Then of course there is the sending them to school with all the other kids whose moms didn't think keeping their kid home with a fever, strep throat or that mysterious rash are necessary and we just get set up for more "I can't believe we survived this" moments.

David's moments started before he even left the womb as my hematacrit dropped due to a placenta-previa and I was only 27 weeks pregnant. Being seemingly fine one minute and the next having everyone rushing to get you to surgery and the neonatologist coming to tell you that they will "do everything they can to keep your child alive once born," is quite the end to a pregnancy and quite the start to a brand new life...but we survived. 

There is nothing that makes a parent more desperate than knowing their child is sick, maybe even dying and there is nothing that they can do to protect or save them. I had many of these desperate moments the first three months of Davids life in the NICU. It was a roller coaster ride of inconsistency and emotional turmoil as the day might start just fine, but within minutes turn critical. Many was the time I sat by my sons bed, holding my rosary and begging God not to take him from me. I would watch the breath mechanically go into him and see his tiny body fighting for life and I was powerless to do anything but pray.....but we survived.

How many frantic dashes have I made to the ER under my own steam or by ambulance because of seizures, sickness and other life threatening issues made more relevant and scary due to his condition? Too many to count and I would always find myself back at his bedside, usually alone and praying that hopefully once again it was God's plan for David to stay with me and live his life. The hours spent watching his O2 sats, his blood pressure and his heart rate and the gut wrenching fear that would overcome me each time the alarms would go off telling the doctors, nurses and me that no...he was still not okay were terrifying.....but we survived. 

Of course there were also the surgeries...many surgeries and they were mostly all BIG surgeries that would be hard on the healthiest person, let alone on my little guy. Each surgery was performed by the best in their field, but long hours under anesthesia and risks of infections and post surgery complications were always against David. One time, we almost lost him as he became septic post surgery and he was literally moments away from death. We were at a hospital in another state, away from home and I was by myself, once again praying that this would not be my last moments with my son. And even the surgeries that didn't have such dire post surgery outcomes had their difficulties, such as the spika cast that was basically a cast on both legs from hips to ankles with a bar in between that kept his legs in a V formation. We had to drive 8 hours in our van with his legs like this to get home. Poor guy was a trooper though.....and we survived.

Yes, David is a survivor. He has survived prematurity, a grade 4 brain bleed, strokes, hundreds of seizures, Candida (and all the nasty side effects), two major hip surgeries, leg surgeries, a major spine surgery, the flu, pneumonia, being septic several times, strep throat, hypothermia brought on by medication, 2 post surgery broken legs, surgeries to remove hardware and shunt surgery five times (three of those times were within three days).....and I survived too!

Life as a Special Needs mom is all about survival...the child's and the parents. It's about faith, prayer and the ability not to sweat the small stuff and actually knowing when it is the small stuff. Looking back, these last 18 years have been quite the adventure and mixed in very heavily with all of  the drama has also been laughter, watching my son whom they said would never make it out of the NICU not only survive but also thrive. I have watched him grow and mature into a beautiful young man with a mind of his own, a stubborn streak a mile wide and a wicked sense of humor. There have been trips, mile stones and tremendous joy and those I guess are the way I as a mom have survived, because only when Facebook reminds me of the hospital stays, surgeries and critical moments do I think of it as survival. Day to day as I watch my boy grow and live his life happily and to the fullest, that is just what I call living.

Yes, I am a survivor but more importantly I am a mom to a very special boy and  quite honestly, I wouldn't change a moment of these last 18 years. God chose me.....and we continue to survive.

The First Day of the Rest of His Life

So here we are, one day post surgery. I won't lie, the days leading up to the surgery had me crazy. Yes, crazier than I usually am! David wasn't feeling great the week before so he stayed home from school hoping to ward off any germs and sickness that might push the surgery date back even further. 

I had not really talked to David about the surgery simply because I didn't want him agitated or upset those last few days. Silly me, I should have known how in-tune to me he was and that he would have naturally picked up on my "craziness". He did not sleep more than two hours from Saturday until yesterday at surgery time. He was wound up, irritable and just generally acting the way I felt. 

Lucky for me I had a couple of distractions in the form of fundraisers on Sunday which helped to keep me from completely going over the edge and David had a couple of visitors that had the same effect on him. We made it to surgery time and here we are today.

As I was getting ready to leave for the hospital yesterday morning, it was a surreal feeling of peace and anxiety all rolled into one. I am sure this weirdness was brought on by lack of sleep and sheer stress. David sat silent all the way to the hospital but as we made our way to admissions, I definitely saw a change in his demeanor. He became almost sullen as if he knew what was coming. 

Once taken to pre-op, I could just feel every muscle in his body tighten up. His cooperation in putting on the gown and getting situated was nil and when a nurse took his arm to take a blood pressure he started getting a bit combative, mistaking her actions for those of someone looking for a good vein. Hint: he has no good veins anymore. 

I truly hoped that he would be able to be in the OR and somewhat sedated before they began trying the daunting task of vein searching and sticking, but this was not to be the case. However, there is a lot to be said for pre admission and doing it several weeks early. By doing this, they had the anesthesia team ready to come down, bring their magical equipment (a sonography machine) and immediately find a vein. Unfortunately that vein was high up on his arm almost to his shoulder. Yes....I cringed. Quickly finding the vein didn't mean that it still didn't take four of us to hold him still for the stick. For being the size of a twig and having cerebral palsy, he has amazing upper body strength. Most people don't ever see this as it only comes out when he is about to get stuck or he is highly frustrated. The good thing though is, the moment the needle is in, he is fine and back to his mild mannered, easy going self. 

For the first time ever, after arriving at the hospital at 5 a.m. with the intent of having surgery at 7 a.m., the surgery schedule was running on time and like clockwork. At 6:45 a.m., David and I were at "surgery corner" where we hug, kiss and then he goes to surgery and I go to the surgery waiting room. 

Like almost every surgery he has ever had, I walked into the waiting room, sat down and realized that once again, I was all alone. Initially I absolutely hate the feeling and I start having a mental conversation with my late husband Tim, telling him once again that I am not happy to be sitting their without him. Then though, I start to get lost in the solitude, find a chair where no one is likely to strike up a friendly conversation or annoy me with their loud conversation either on the phone or with others, and I settle into the "comfort" of my own thoughts. 

Except for a couple of eight hour hip surgeries which were a doozy, most of David's surgeries have been no more than an hour or so, but I was prepared for this one. I had been told initially to expect at least a 4-6 hour surgery as they were going in and fusing his spine and putting a rod in from T10 down to his pelvis. However, talking to Dr. H in the pre-op area, he had stated that there was some concern of David needing a possible future surgery on his spine because with lower curvature and repair such as this, sometimes after recovery, their upper spine will start to curve above the repair. This worried me a bit and I asked if they could just go up and do the surgery higher to avoid another surgery later on. He said he really didn't think that would be necessary, especially since it would be a tougher surgery to recover from and a longer anesthesia time. I told him that I would defer to his judgement then but if he got in there and felt that it would be better to do the longer surgery, to just do it. Low and behold they hadn't been back there 30 minutes when I got a call from the OR. It was Dr. H telling me that he and the other surgeon had decided that it would be in Davids best interest and the best interest of his long term recovery to do the longer more excessive surgery (T4 to the pelvis). Cool....no more spine surgery after this. This also meant at least a six hour surgery. I prepared myself in my little corner of the waiting room. I prayed first and then began a marathon game of Candy Crush. 

I was notified by text message that surgery began at 7:50 a.m. I mentally counted the hours (on my fingers of course.) I was too tired to do that kind of math in  my head. So I was going to be there until at least 1 p.m. waiting for this surgery to end. I knew my Candy Crush skills were not good enough to get me that many hours of play so I was glad I had my Kindle loaded with books. At 10:29 a.m. I got the text message that the doctor was finishing up surgery on my "loved one" and that he would be out to talk to me soon. I did the math on my fingers once again and realized that it had only been 2.5 hours. I assumed that they had sent the message to the wrong person and went back to reading the autobiography of Eric Braeden. Much to my surprise, within 20 minutes Dr. H appeared in the waiting room doorway and came walking towards me. Even though I had received the earlier text message, I still felt my body tighten up. There was the slightest twinge that maybe the news he was bringing me wasn't good. Immediately though, his smile told me different. He said the surgery had gone "perfectly" and quickly and that he was on his way to recovery. My heart began to beat again. 

Tuesdays or at least Tuesday April 10th, must have been a big surgery day at Wesley. The waiting room had been full all morning (making finding my quiet corner difficult) and apparently the post op area was crazy busy, so instead of taking me back to see him, they took me to the PICU Ronald McDonald room to wait for him. Now that wait would have made me crazy, not being able to see him right away, if not for a friend coming up to wait with me. We talked and the minutes that would have seemed like hours otherwise, went by fairly quickly. 

When they came to get me, they took us to one of the newly (within the last couple of years) PICU rooms. They really are amazing with doors on the room and everything. Our previous PICU stays had been behind curtained divided stalls with room for little other than a patient bed, equipment and the torture devices they called chairs. Now though, there are actual rooms with parent couches that fold into beds. It is wonderful! 

I was immediately taken aback by the paleness of my "baby boy" when I first saw him. He was so pale he was almost clear, but they assured me that he had lost little blood and what blood he did lose they replaced with his own. His hemoglobin was good and the paleness was simply the result of the "trauma" to his body in the form of this surgery. 

There were hours or what seemed like hours of him coming out from under sedation and being disoriented and I am sure....in pain. He had four IV's hooked up to him...the original pre-op IV, one in his hand, one in his wrist, an arterial IV and then several obvious bandaged places where there had been "failed attempt" sticks. He had heart monitors, OT sat monitor, blood pressure cuff and his drain. He looked so small and he was not happy with the oxygen canula in his nose. He was trying to fight it all, to the point that they had to soft restrain his dominant hand. Remember that super strength I told you about earlier? Well apparently sedation doesn't slow it down at all. 

Finally a couple of hours later, he began to be more coherent and aware of his surroundings. The restraints went away but he was not pleased with the catheter down below and so we had a bit of a struggle trying to keep him from pulling it. Finally I got frustrated and simply told him...."You pull that out and it's REALLY going to hurt. And what's more....it will have to go back in!" It seems that his desire not to be in any more pain than he was already in far outweighed his frustration with the tube coming out of his penis. We had no more issues in THAT area. 

The rest of the day, the nursing staff played the less than fun game of trying to stay on top of his pain, without keeping him so sedated that it affected his breathing. It is a delicate dance that these poor nurses have to do, staying within the perimeters of doctors orders and taking into consideration the affect on the patient. David has a very high threshold of pain, but that is not to say he doesn't feel pain, so we spent the evening/night watching the monitors making sure that the morphine and other meds weren't sedating him to the point of forgetting to breathe, all the while keeping his heart rate and blood pressure where they needed to be. There was also a period of time where there was concern about the amount of blood coming out of the drain. It was concerning enough that they still weren't ruling out having to give him a transfusion if the drainage didn't start to lessen.

Thankfully, both the day nursing staff and the night nursing staff were amazing and on their toes at all times. Even with this, I was a mother on the edge and getting more and more sleep deprived as the hours creeped on. It was getting to the point that I was concentrating more and more on the monitors and the numbers going up and down than I was on anything else. I think I was also driving the nursing staff crazy, alerting them to every shallow breath or monitor blip. Finally, the night nurse who obviously had had a bit of experience with neurotic parents like myself, reminded me that if I got some sleep, David might also calm down and get some sleep. "And I can actually get some work done and tend to other patients," is what I am sure she was also thinking but too kind to say. So finally about 3 a.m. my eyes closed from sheer exhaustion and I knew nothing until about 7:30 a.m. this morning. 

Today has been much better in the respect that David's drain is having less and less in it. They pulled the catheter which as I promised him, did not feel good at all, but at least this way, they didn't have to put it back in. They were also able to remove two of the four IV sites. His incision or at least the bandage on his incision looks great with very little seepage. His vitals are all great, his color is back and he has been released to eat today. He is also off the morphine and has been brought down to toridol and loritab for his pain. He is also smiling today and watching his favorite Nickelodeon shows. There is much to be grateful for as the PICU nursing staff are amazed at how quickly he is recovering and getting ready to say good-bye to us as we prepare to make our way to the general pediatric unit. However.....some grave realizations have set in this morning. 

I did as much checking as I could prior to surgery to find out what I would need for his home care and after talking to everyone I knew that had had this surgery (unfortunately I had no visits with anyone with CP) and after talking to the doctors nurse several times, I was confident pre surgery that we were good to go. Today my confidence is in the toilet and I am for the first time in years, questioning if I am equipped both literally and figuratively to do this. Of course I will make it happen and get equipped ASAP, but dang......

David had his first physical therapy session this morning. It was at this point that the realization that EVERYTHING that we had come to know and do where David is concerned is going to change dramatically. 

Over the years, David has adapted to his world and his physical limitations by finding his own way around them. He is a fiercely independent young man and truly, very little limits him. We have also found ways and routines that work for us from eating, sleeping and diapering to communication and mobility. For years we have been a finely oiled machine that runs with little or no outside help. The outside help was not our choice, it just is what it is. Today though, we found that just about everything we do will have to be redone, reviewed and reworked. 

The PT sat David up on the side of the bed for the first time. Sounds simple enough right?! It's not. David has always sat himself up in his own way. He can't now. At least not for awhile. The old movements he was used to will no longer work because he now has a foot long or better rod in his back that no longer allows him his usual movement. Sitting up now requires a log roll movement followed by elbows, arms and a lot of help from another human being in order for him to sit up. Once there, he now has a lot of pain involved so time at a 90 degree angle on his own is extremely limited and even with help, he didn't last long. Then there was the standing. Again, the pain is a huge deterrent right now, but the surgery has put some height on him....probably a good 2 inches, so the walker that was already at height capacity is no longer going to work. Work or not though, it will be a bit before standing and walking will be in his bag of tricks. I was promised though, by the PT, that it is coming quickly. After a painful few minutes, David was tucked back in bed and asleep. It took a lot out of him. She is coming for him again this afternoon though, so it will be interesting to see how that goes. 

Knowing something intellectually ahead of time and realizing the reality of said thing when it has to be put into action are often two different things. I knew ahead of time that life would be different post surgery. I just was in denial I guess, about how different. Today I learned that at least for now and maybe forever, my van is no longer going to cut it. Up til now, I have lifted or David has helped transition himself from his wheelchair into the seat in the van. No longer is this doable as he can't be lifted. Even leaving the hospital will not be possible without getting a wheelchair accessible van transport to take him. All of his equipment (walker, leg braces, wheelchair, stander) are either going to have to be replaced or readjusted to fit his new straight spine and the life that goes with it. His favorite mode of mobility next to his walker (crawling around) is no longer doable. Even changing his diaper has to be revamped and relearned by me as our old system simply will not work. 

The thing that stood out most to me today was that for David to get the most out of his recovery and to come back to be the best he can be, I am going to have to have someone (likely a physical therapist) come to the house at least 2-3 times per week for awhile. I have so much to learn and he is going to need so much help and work that I am almost overwhelmed. The hospital PT is going to hook me up with the peds care coordinator to help me line everything out, but it doesn't stop my head from spinning right now or my anxiety over my inability to be the mother he "needs" instead of just the mom he "gets"..... in the next few weeks. So much to figure out and I am sitting here mentally in the fetal position sucking my thumb. It is not a pretty picture. 

Please don't get me wrong. I am beyond grateful at where we are at. So far David is so beyond what they expected with this surgery and he is getting better and stronger every second. I also know that with David's mental and physical fortitude, he is going to show us all a thing or two about what spinal surgery recovery should look like. But I am not so naive as to not know this road ahead is going to be long and bumpy one. There will be post surgery rashes from the tape and derm bond that have to be watched to avoid infection. There will be days where he is in pain and he fights PT, me and the world in general. I expect to get pinched a lot (his method of showing extreme frustration) and for there to be days that we both cry and feel that life just ain't fair. I also know though that there will be days when he exceeds all expectation, there will be laughter, joy and most of all there will be recovery. David will walk, he will learn once again to Davidize the world and accomplish whatever he wants. Bottom line, yesterday was truly the first day of the rest of his life and it will be an amazing one, with less pain, more mobility and I have no doubt that whatever he does....he will be amazing! 

Dear Ellen

It has been awhile since I have posted here. There have been a multitude of reasons, but I really don't have time to go into all of that. In fact, I really have very little time for much as our life, mine and David's is about to take a huge hit.

February 2, 2018, my mind was fully on the upcoming surgery David will be having in March. Along with all of his other chronic issues, he also has curvature of the spine. It is very common in kids with cerebral palsy. As they grow, their spine continually curves. Most can't just be fixed with a back brace because of their muscle tone, so it is a delicate decision when to do the surgery. The doctor was waiting until David had 60% curvature. After 60% then the curvature can start causing real problems to the point that it can start crowding organs and cause brand new issues that shorten life expectancy and affect quality of life. Already, the curving has caused noticeable leaning which when he walks with his walker  affects his hip which although David never complains, has to cause pain.

The surgery is a 4-8 hour surgery with a stay in the PICU following and then a stay on the peds floor and then a lengthy recovery at home. We chose March to do it because the cold and flu season would be almost, if not completely over and David would have enough time to heal so that by summer he could be doing water therapy in his pool.

The surgery itself scares the bejeezers out of me because it is a spinal fusion. His time under anesthesia will be very long (David doesn't do well with long surgerys and that much anesthesia) and quite frankly, we aren't sure what Davids walking, sitting and moving abilities will be following the surgery. Yes, he should be able to sit, stand and walk better, but........ Once again, we will be dealing with a whole new set of normals.

It was my intention that while David was recuperating downstairs post surgery, that I would finally finish redoing his bedroom all in Spongebob. (Yes, he will be able to go upstairs after the recovery, because he will have a stair chair.) I have literally imagined how excited he would be the first time he goes up those stairs to see his Spongebob room. It is part of what has kept me going, thinking about this surgery. In fact, I never thought anything would or could take a back seat to the worry over the surgery. Apparently somewhere out in the universe though, someone said, "Hold my beer....." because February 3, 2018, I found something that is giving the worry over Davids surgery a run for it's money.

Going back a bit, the house we live in is the house I grew up in. My dad purchased it for my mom and us kids back in 1976. My parents were divorced and this was part of their divorce agreement to each other. Mom lived in this house until her death in December of 2002. In February of 2003 my dad approached me and asked if my kids and I would like to move into the house. We had been living in a mobile home outside of town since my husband had died unexpectedly, just months after David was born. Moving back to "my" childhood home gave me some piece of comfort as I had three boys and I was on a journey of raising them by myself, something I had no idea I would be doing. I did verbally make sure at the time that if we moved in that he wouldn't decide to up and sell the house and uproot us. He said that he would deed the house to me upon his death. This is a verbal promise that has been made to me over and over again in the last 15 years and the last time was July of 2017. "You will never lose your home! That is your home!" He was my dad. I never questioned it's validity.

On February 3rd, our whole world blew up. I was called to my dad's, where my brother handed me a letter of eviction stating that we had until March 1, 2018 to be out. It was also stated that anything left on the property such as pool, deck, shed, etc, would become their (my dad and brothers) property. Now come on....it is February in Kansas. Most days our temps are not above the 30's. The pool is frozen solid but we are to have it drained, dismantled and removed by the 1st? We are talking a 18 x 33 foot pool.

According to what I was told, their thinking was that my dad wanted the money in case he had to go into long term care. Fair enough. I was told that I could purchase the house at 75% of the appraised value, them both knowing full well that we live on social security and I stretch that from month to month and that due to life, I couldn't buy a stick of gum with my credit. However, regardless of their reasoning, this thing was done behind my back and premeditated, giving us no time to prepare for anything. It was a devastating blow for many reasons but the most import was David.

David is potentially about to lose the room he loves, the home he loves, possibly his dogs. He is going to lose his pool that was donated to him, possibly his school, teachers and classmates and everything he has known for almost his entire life. When I reminded my brother that David was having a major surgery in March, his reply was...."Well you'll be moved out by then." Really? Who says or does that?

It took me a few moments after leaving "the meeting" with them to get my wits about me. It was a blow that came out of nowhere and I had to find a way not to implode David's life and all he knew. David just doesn't handle change well and this is more than just a little change.

David and I live in an amazing community. There is true goodness and kindness all around. The community of Mulvane has gotten behind us and are trying to help raise the 75% so that David can keep his home. It is no longer just mine and David's fight (which is what I am used to) but we have warriors all around us, selflessly fighting right along with us. Unfortunately we are talking about 75% of $104,000.00 plus closing costs and I believe my brother mentioned contract fees, so this is not just an easy thing. This is a daunting task and March 1st is drawing closer with each passing second.

There is a fundraising site YouCaring, that many have graciously donated to, and for those that don't like those sites, there is a PayPal you can donate to with the email address lelam3@sbcglobal.net and finally for those that feel a bank is the only way to go, there is a donation account set up at our local bank:
Carson Bank
P.O. Box 158
Mulvane, KS 67110

There are also fundraisers being planned and people offering their help in anyway possible. I am overwhelmed and beyond grateful that people in our world as well as complete strangers care so much that they are generously doing what they can to help. I can't even fathom the kindness.

One of the biggest things and probably the greatest long shot, is that many have turned our story into the Ellen Show. I was amazed when I heard that so many people had been sending our story in, but I am fully aware that we are one of a million people that need help and our story doesn't compare to some of the need out there, however.....even a long shot is worth trying. So in trying to get others to continue sending our story in, one of the people trying to help us posted on facebook that she would like to see stories about David and what he means to people. Well.....this entire blog is David's story. I started it years ago and it is a time line of Davids life. But I decided I would write this today and tell Ellen and the world what David means to me.

Dear Ellen,

My son David is 17 years old. That just sounds like a statement, but in fact.....that in and of itself is a miracle. David was the gift we didn't know our family wanted or needed. He was the most wonderful surprise when we found out we were pregnant, but the unthinkable happened and David was born prematurely at 27 weeks, 13 weeks premature. He weighed 2.2 lbs and was barely 12" long.  He had a grade 4 brain bleed, seizures, strokes and he got Candida (a yeast infection of the blood.) He was on a vent in the NICU for 3 months with the doctors telling us that he was "beyond critical" almost daily. More than once we were told that he wasn't going to make it through the day, so to prepare ourselves. He was a miracle though and after 5 months in the NICU....we brought him home. Sadly, his father only had a few more months with him, then he died suddenly of a brain aneurysm.

Since the moment of his dad's death, I have done it all alone and as hard as it has been at times, I am honored to be his mother and to have the job of raising him. David has cerebral palsy, hydrocephalus, he is hearing and visually impaired, developmentally delayed and he has a seizure disorder. More than that though, David is an inspiration! He has undergone painful surgeries to help his muscle tone and help him walk with a walker. He has come close to death several times and from what I understand, much of the time he is in pain. You would never know this though. He just keeps going.

David, although very developmentally delayed is also very smart. He doesn't speak but he never seems to have a problem getting his point across. He is funny with an amazing sense of humor and his laugh is so contagious. He can't help but snort when he gets tickled and everyone in the room can't help but laugh right along with him.

David has taught me that we all have our issues but he has never let his disabilities or issues get in his way. He loves life and he loves the people in his life. He has also taught me that normal is just a word. He has taught me patience, the beauty of life and what it is to love a thousand times more than I ever dreamed possible.

David's favorite things are his 9 year old corgi Spud, anything that makes musical noise (I was in the process of getting him a drum kit), his 4 year old niece Willow, Hot Wheels cars and watching Spongebob and Cops. He loves music and he especially loves to hear his older brother sing.

David appreciates the smallest things and never complains about anything. He pushes himself like no other and at times makes me ashamed that I can't keep up.

David is involved with Circle of Friends at school which is an organization which has general education kids as peers for the special ed kids and together they go on outings and do fun things together. The kids all love him. He has known them all of his life and they have learned how to communicate with David and to love and appreciate him as the special human being he is. It is an amazing thing to see.

Ellen, David has spent his entire life fighting and yes that is quite an accomplishment for a 17 year old who wasn't even suppose to get out of the NICU. Because of Davids diagnosis's, there will be more pain in his life, more surgeries, more scary moments, but David will fight it all and I have no doubt win because of his strength of spirit and his love of life. With all of this though,  David simply doesn't deserve to lose his home. He doesn't deserve to lose everything he knows and loves and he doesn't deserve to maybe have to leave the town and the people he has grown up with and who love him.

So yes Ellen, I am begging for some help. I am a mother and I checked my pride long ago. I will do whatever it takes to help my son and if you can help, I promise to spend every day of the rest of my life paying it forward.

Sincerely,

Lisa Elam
aka David's Mom

A New Year....A New David Blog!

Yes, I know....it has been eons since there was a David update. My bad. No truly.....my bad! I have redirected my efforts on life and because of that, blogging was kind of left out in the cold. I hope to be better in 2017, but I make no promises as I plan on being very busy off-line...so we shall see.

So what is David up to? Well, he is nearly as tall as I am. By most human standards, I am short but for David, he has grown leaps and bounds. He turned 16 in September and he started to school four days per week at the high school back in August. This was extraordinary, as if you remember last school year, Davids seizures were getting a little out of control and scary and he had to be taken out of school for several months. When he did go back in February 2016, he went back to a four day schedule, taking Friday's off as that was his therapy day at Heartspring.

Through the summer, David gained a lot of strength and his seizures became almost non-existent. His meds and his vagal nerve stimulator (VNS) were keeping them well controlled. He was also getting much stronger with his walker and his bike. It was the first time in many years that we were able to feel some kind of normal as a family.

When school started in August, God was obviously answering prayers as we were blessed with the most amazing teacher for David. She actively volunteered to go to his out of school physical therapy both during the summer and during school. She attentively listened to everything his PT (physical therapist) said and went back to school and implemented every detail into his school life. Because of this, David went from being mostly wheelchair bound during school to walking most of his day with his walker and without wheelchair assistance.

This school year has been one of the best David has ever had. Until November, he had missed almost no school and was doing absolutely wonderful. In November and December, he had a few seizure issues (mostly from a growth spurt and out growing the therapeutic levels of his meds) and he caught a couple of bugs that were running around the school, but all in all.....his first semester was nothing short of a miracle as far as school years go.

One thing that both was amazing and terrifying all at once for me,  was the fact that in December, his PT told us that December would be his last PT for awhile. When she told me, I could literally feel my heart almost stop. I had no idea how much "I" had emotionally come to rely on his weekly therapy with her and how much she had become my compass on how he was doing physically and how I was doing as his mother. Sound silly? Trust me, when you have a special needs child, you get your reassurance whenever and wherever you can. Although his no longer going to PT (for awhile anyway) felt like a gut punch to me, for him it was an amazing thing. This meant that all of the goals she had set for him....he had met. As she explained it to me while I hyperventilated.....he had gone as far as he could at his current strength level. In order for insurance not to come in and control his therapy now that he had met his goals, she was voluntarily backing off his therapy so that if for some reason he had a set back, he could get right back in. However, if she didn't back off now, insurance would likely mandate that he couldn't be seen again for a year and if he would happen to need PT in that year....he would be out of luck. This way too, we have a whole new semester (few months) to work on his strength both at home and at school. As his strength grows and at the rate he is going....by May or June he can be re-evaluated and if he is ready, a whole new set of goals can be set such as climbing stairs, standing up with the help of only one hand or even possibly taking steps on his own without walker assistance. Then he can return to PT.

I know it is an amazing thing that he has made it so far and continues to progress, but looking at this new year without regular, weekly PT is still a bit terrifying to me. She assured me however, that I can handle this. I hope she is right...and because we will not be going to PT on Fridays....David will now be back in school on a Monday through Friday schedule. Routine is a wonderful thing for him, but I have to admit that I will miss our late mornings on Fridays and not feeling rushed to be out the door. However....it is a small price to pay to see David happy, healthy and progressing.

Christmas break has been a good one this year. As usual we have all passed multiple bugs back and forth and because our house has been fuller this year than normal, there seem to have been more bugs than ever before, but through it all, David has stayed pretty healthy.

Now that the new year is here, my work is really laid out for me. Since we won't have weekly PT, we have much that must be done to strengthen him both at home and at school. He will actually go from 1 hour once a week to at least 30 minutes every day. He will have to keep up with his walking and it was even suggested that with some of the strengthening he needs both upper and lower body, that perhaps I look into a gym membership for him. We will see if that is even possible.

Yes, I am feeling a bit overwhelmed but in our world right now, things are fine. We are blessed to have all that we have and David continues to be a trouper, fighting a condition every day that would crumble even the strongest of most of us.

So there you have it. We are starting the new year on a positive note and hope to maintain the boring monotony that is currently our lives for a long time to come. And perhaps....this all will give me a little more time for writing the occasional update more often. Who knows....only time will tell. 

Goals Met and Such.......

In the past fifteen years, there have been so many roller coaster rides. If you read this blog or follow David on Facebook, then you know, and you know I have taken you all along for some of those tougher rides. Currently though, things are exciting. This doesn't mean that the minute I push "publish" on this blog that we won't be right back on the roller coaster, but it does mean that right here and now....in this moment.....David is doing and accomplishing things that he has never done before. He is making daily and consistent progress and yesterday after PT, I had to take some alone time and shed a few tears.

Yesterday at PT, Davids therapist did an updated evaluation on where David is at as to where he was a year ago when he started with her. We set goals back then for David and while he made a little progress here and there, he had a lot of set backs with seizures and his health. We missed a lot of PT sessions and for a while, he lost a lot of ground physically. In January, I almost quit sleeping over the state of David's health.

If you remember, David was doing home bound school because of his seizures. He was throwing them almost daily and sometimes multiple times in a day. He was fairly inactive and even though he was having HB school, he was just losing so much. His little body looked frail and his ribs stuck out like razors. I saw it and was trying to figure out what to do as I met with doctors, his PT and his school team. It was getting pretty devastating.

It was at this time I started researching alternate ways of eating, diets that worked for kids with cerebral palsy and foods that would help to build muscle in his body and strengthen him. Once the diet was in place, we hit the PT strong. The diet seemed to be keeping him healthy and we were seeing less and less seizures.

Then came the botox. I knew so little about botox but both David's PT, whom I trust implicitly as well as his neurologist whom I trust even more, supported botox therapy for him. I had to try for his sake. After his first week of weakness and my constant fear that something would go wrong....it has been one of the greatest things that has ever happened for David.

So at his evaluation, his PT proudly told me that David has met or surpassed every goal that she had set for him. He can ride his bike, he can walk in his walker without a seat and he can walk pretty good distances with his walker. It was like he got straight A's on his report card and I was so excited I wanted to cry right there. So as these were all met, we had no choice but to set up a whole new set of goals and one of them is......standing on his own! It literally took my breath away.

David is very determined, but even with his determination.....he will have obstacles ahead. They are the kind of obstacles that to this mom are terrifying, but they are also an ends justifies the means scenario, if the outcome is that David is independent. Currently we are getting David as strong as he can be from head to toe and diet and PT are the keys to this. Then there will be his spine surgery which at this point looks to be a necessity. If not done, then eventually the curvature will start crowding his internal organs and make standing impossible. After that recovery and re-strengthening....then there will be the decision to see if he needs his hip done again. You might remember that after his last hip surgery he broke his leg and in the process of the leg healing, his hip fell back out of alignment. If that surgery is necessary, then he will have to heal and once again....re-strengthen. After that though.....the sky should be the limit for him.

It is a lot to process and a lot to keep this mom from sleeping some nights, but it is also exciting. So much has to go into the next couple of years of Davids life and one thing his PT really wants is the gradual banishment of his wheelchair. Yep, she wants him using only his walker as his means of mobility whether it is at home or at school. This means....Mom, teachers, para's and all those who participate in David's day to day life are going to have to be strict with him, patient with his progress and huge cheerleaders in his life. I have no doubt we can all do it. I mean really....who doesn't want to see David achieve his independence?!

So yeah....standing on his own. Those are words that I had been told to never even think about where David was concerned.....let alone hope for. Now they could be his reality. Now.....maybe you understand my tears.

Well....as I said....this summer is exciting and soon we will add the pool to our daily therapy. David is amazing and apparently he maybe walking yet. We will keep you posted. Until then....Happy Summer Everyone!

Botox....It's Not Just for Wrinkles Anymore

So...you know Botox? No you don't! Okay....maybe it's just me. Maybe,I don't didn't know Botox, but I am learning.

This has been an interesting week. Interesting in the fact that I have felt awful. I think it is the change of seasons along with maybe having a bit of a bug, but it has made me wish I could crawl into bed and stay there until I feel better. Unfortunately, life is not as accommodating as I would like it to be, so.....I lay down when I can and carry on with life as best I can. Yes, I will survive, but it hasn't made this screwy week any easier to deal with.

Monday, David had Botox injections. They are likely to be the first of many in the next couple of years. Yes, I said Botox. I know....crazy right? If anyone in this family needs Botox...... I will not even finish that sentence.

Botox is something that was brought up to me about a year ago. The neurologist originally brought it up and thought that somewhere down the line David could benefit from the procedure. Not knowing for sure how David could possibly benefit from Botox, it was one of those things that as a special needs mom, you kind of let drift out of your brain or file it somewhere in the back of your mind under "I'll think about it later."

Later came, when David started going to Heartsprings for physical therapy(PT). The PT loved the things that David was accomplishing but she felt he could do more with a little help. That help she felt could come in the form of Botox. So I unfiled the topic and asked her more about it.

David already has a device implanted in his abdomen which is called a Baclofen pump. Baclofen is a muscle relaxant that is often used in kids with cerebral palsy, as their condition causes their muscles to be very tight which makes, walking, using their legs, feet, arms or hands very difficult if not impossible. In kids like David, if the Baclofen pump is implanted, then they get a steady and constant dose of Baclofen which helps to loosen the muscles. David's upper body is pretty good, but his lower body had been very tight which made PT difficult and walking almost impossible. Once the pump was implanted his muscles became much easier to work with. The problem with the pump though, is that it is kind of an all over agent. It can't really target specific muscles. which means some muscles get looser than others and then that can be a problem. This is what we found with David.

If you see the videos I post of David riding his bike or walking with his walker and you notice that he looks awkward or seems to be dragging his legs a bit, it is because his hamstrings are very tight and can't carry the load of his body properly. They are making his other looser muscles pick up the slack for what they should be doing. Valerie, his PT felt that if he got Botox in his hamstrings then this might loosen up only those muscles, thus making it easier for him to strengthen them. We went back to the neurologist and he felt that she was right and so Botox it would be.

To be given the injections, David had to be admitted for outpatient sedation at the hospital. It really was much easier than other outpatient "surgeries" David has had. They bring him to a hospital room and everything is done right there from start to finish. I haven't decided yet if it is an upside or a downside that I was allowed to stay in the room the whole time or not.

The procedure was a little rough for David as they had to put an IV in and his love of IV's went out the door many many hospital stays ago. It takes a crew of 3-4 of us to hold him down as he just freaks when he knows they are going to do it. It doesn't help that his veins fold, roll and run away every time a needle comes near them. A dose of oral Versed and 3 wildly uncomfortable sticks (for all involved) later, and he was good to go.

They then put him under, where he was in a half awake, half asleep stupor. They need his muscles reactive, but his body feeling or more likely remembering nothing. In the room at all times are the neurologist, the anesthesiologist, nurses, students (it's always a teaching moment with David) and me. The doctor then injected David in each hamstrings with the Botox. He used a long needle attached to a machine that I believe was showing waves of his muscle activity.

The actual procedure only took about 10 minutes and they said he should come out of the anesthesia within an hour. Two and a half hours later, we were still waiting for David to wake up as he slept a deep, snoring sleep.  Once he was awake though, he seemed fine and they said he was good to go to school the next day and there should be no side effects or issues. You would think by now.....we would all know David better than that.

So what is the end game using Botox? The way the Botox works is that every day we will see more and more looseness in his muscles. By about the 6-8 week mark he will hit the peak. During this time we will work those muscles, stretching them and making him ride his bike and walk as much as possible. In about 4 months, we will then do the procedure again. The goal is that each time, less and less Botox is injected and more and more hamstring muscle is built and strengthened. In the end, we want his hamstrings to be strong and do what they are suppose to without any Botox intervention.

After we got home, it was obvious Davids legs were very shaky. The looseness apparently begins right away. That night, he had a tiny seizure. It was so tiny in fact, that I wasn't even sure it happened, but with the stress his body had been under that day.....I wasn't surprised.

The next day he went to school and when he came home, he was a little monster. Yes, I can say that....he's my child. I put him in the stander and he refused to get out after an hour and a half. He went into full on hit mode every time I tried to take him down. I am thinking that maybe that stretch made his hamstrings feel good. His circulation though wasn't liking it as much as his hamstrings were, so in the end, Mom won out. That night, David had another seizure. This time it was evident.

Over the course of the next 36 hours, he had three more. In the process of all of this, the neurologist and I were in close contact. Why was he having seizures? It could have been the stress of the procedure, out growing meds, the wind blowing the wrong way.....who knows?! Whatever it was though, we needed to get them under control, so he upped the dosage of one of his night time meds. Yesterday morning I kept him home from school because of his seizures and his less than sunny disposition. It had been a long night for all of us and quite frankly I didn't figure he would be any good at school. I was right.

He got up and played until about 11 a.m. at which time he crawled in bed and fell asleep. You remember that post procedure sleep I was talking about on Monday? Well, that is how he slept yesterday until 8 p.m. He woke up long enough to eat and then fell back asleep. He didn't move until I forced him to get up at 9 a.m. this morning. This is so not David. So, the neurologist and I had another talk. Apparently David is not handling the added dose of the med well. The doctor is however hoping that he was on it long enough to have handled the seizures. So as of tonight, we are back to our regular dosages and we will see what happens. We may have to play with meds for awhile, but Zombie David with the nasty attitude is not acceptable.

Today, David went to PT and his therapist had him riding his bike. His muscles aren't strong enough yet to pedal by himself like he was doing, but he was riding with assistance and with every pedal he was stretching and strengthening those little legs. So for now, my job is to put him in the stander daily. Schools job will be to make him walk and ride his bike as much as his strength will allow. The bike will likely be easier but the walker is still necessary. And finally....Davids job is just to keep pushing forward like he always does.

Oh....and a little update to project Fatten David Up. The 5-6 meals per day along with protein and good fats seems to be working. When he was at the hospital Monday, they weighed him. Since February, he has gone from weighing 74 lbs to now he weighs........87 lbs!!!! I am very pleased and so was the doctor. Way to go David!!!!

So there you have it. David's getting Botox and Mom's gray hair and wrinkles.....well.....they remain the same. Stay tuned!

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.......

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.

Understanding!

Yes...I am aware that it is Wednesday and Project Day...however, I have no more projects readily done and I forgot to blog about David yesterday in the middle of my choatic day, so I thought I would just make it up today.

Last school year David and I had our hands full with a special education teacher whose special education credentials I highly question. My reasons were varied and many but they all boil down to my first hand experience with her lack of understanding where special needs kids are concerned. That is what today's blog is about....understanding!

I have talked in the past (last week to be precise) about people not giving kids like David a chance. They have preconceived notions about David's abilities and therefore they don't even try with him because they don't feel like he can move forward. They have the notion that he will always be stuck in both mental and physical disability hell. It just isn't so, but only those who truly understand sped kids understand their abilities as well as their disabilities. However, the quirks and stubbornness that goes with sped kids also need to be addressed and accepted.

While David is an amazingly smart and funny kid, he is also stubborn beyond belief and he is extremely OCD about a number of things and he gets frustrated because he is non-verbal and can't always get his point across. What we (those who love him) accept as being a part of David, some in the outside world are not quite so accepting of. Let's start with his OCD.

In the last few years, David's OCD has become more pronounced. It is small things and some of them I think have to do with him feeling secure in an insecure world. For instance, if David goes to the ER....the rails have to be up on both sides of his bed in the room. I don't care how sick he is, he will throw a fit until this happens and if they have to lower them to take blood or start an IV, well the rails being down seems almost worse to him than the needle stick. He is just as picky about his wheel chair. If his feet aren't on the foot rest properly or his arm rests aren't down right, there is potential for a bit of a fit until it is fixed. Luckily, he is getting to an age and an ability where he can fix much of this himself. Some other OCD traits he has are.....he can't stand for someone to cross their legs when they are sitting. If he see's it, he will physically uncross your legs. His worst trait to me though, is his string fetish(for lack of a better word). He has had this since he was very small and because of it, I am constantly picking up string and fibers in my house. His fine mortal skills are amazing and  if he is bored or I turn my back for two seconds, he will pull string or fiber out of anything. This includes but is not limited to...socks, blankets, towels and washcloths. His neurologist says that it is OCD behavior. I think he is just trying to drive me crazy. 

While his OCD is a pain from time to time, it is really not over the top. It is just part of David and how his brain works. However, to some at his school....his behavior over his OCD has proven to be a challenge and they feel they need to break these OCD habits and therefore end the upset behavior that comes with the pulling of strings or the positioning of bed rails. OCD doesn't work this way. I am thinking this should have been Special Education 101 which makes me wonder how some got into the sped field in the first place. Pick your battles people! Don't give him washcloths to fold if you know there will be a battle over strings. Let him handle his foot and arm rests on his wheelchair and be done with it. Don't try to control him, get him upset and then call me and tell me that he is combative. Accept him for who he is and don't try to change him if his actions aren't hurting him or anyone else. You need to work around his abilities/disabilities....NOT the other way around!  He is after all....special needs. From what I have learned, sped kids like David have little they can control in their world and for David it is doubly hard because he doesn't have a voice (literally) so he can't be heard. OCD behaviors in these kids are their way of having some control in an uncontrollable life. Instead of abolishing the behavior (with zero success might I add) work with him. Help give him a voice and some control and the behaviors just might go away on their own.

Another issue that David has had that is common with a lot of sped kids is stubbornness. While David does live in and within a world of rules, like any kid he is not always the first one in line to follow them. David takes life at his own pace and this apparently doesn't always coincide with the schedule of others. An issue that David had at school, was the time frame he was expected to do something in. This might have been taking something to the office, going to the bathroom or even doing a task. His teacher told me that his para was basically falling down on her job as she was not being efficient with her time with David and they were't staying on task. She had told me this several times throughout the year and I wasn't sure what she was talking about until I happened to be at the school on two occasions and was witness to two instances of "the para falling down on her job." Again....NOT!

The first incident of inefficient use of time was David going to the office. Now David is in command of his own wheelchair. He can go fast, slow, in circles or not at all. This particular day....he chose not at all. He had gone to the office and was not prepared to go back to class because there were people in the hall. He put on his brakes and refused to move. Try as the para might, he wasn't going anywhere until he was done being social. This meant that the para had to take the time to get on Davids level and talk to him and yes....basically coerce him. Luckily David's para has been with him long enough to know how to work him and in just a couple of minutes, she had him headed back to class under his own power. Unfortunately Davids refusal to move for those minutes caused the para to get a tongue lashing which ended the moment the teacher realized that I was standing there. After I explained to her what the situation was, all she said was..."Oh!" and walked away. This was not however, the last time this occurred.

The second occasion I was there, David had been put on the toilet. Like a lot of kids, toilet time doesn't always mean they are going to do their business and get in and out in a timely manner. This particular day, David was interested in just about anything other than being on the toilet. It took a few minutes longer than anticipated but eventually....he got the job done. As the para was getting him put back together, the teacher came from another room obviously irritated that David had not already moved onto his next activity. Once again, before she saw me she lit into the para on how she was not staying on schedule. However after she realized I was there, her attitude changed. She and I had several conversations about David being special needs and therefore not always being on "her" schedule. She paid lip service to the fact that she understood this, but the reality was....her schedule would be adhered to....regardless.

Special needs kids are just like anyone else. They need love, compassion and understanding of their own uniqueness. On the other hand, sped kids are different in how they see the world and interact in it. They may accomplish the same tasks that you and I do, but they may get to their end game in a very different way and in a very different time frame. If you live with, work with or teach a special needs individual....then you should know this and be understanding of it. If you don't, then your place is not in their world. It is as simple as that.

The next time you see a special needs person, don't look at them as special in a negative way. On the contrary...give them the respect they deserve because everything they do takes at least 5 times as much effort and time as it does for you and I and yet.....they do it. That in my book makes them special in a very positive and amazing way. David struggles at times with being understood, being "forced" to follow rules he neither completely understands nor cares for and most of all.....fighting his own desire to control his universe, but he always comes out smiling, laughing and ready to try again. His ability to love and show compassion and his desire to keep going and never give up.....makes him at times.....the least special needs person I know. So yeah....understanding. It's a beautiful thing.