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.

RockStar

Well it has been about 11 weeks since my last blog post here. My how time flies. Things have been moving right along. In my last blog post, David was still in the hospital. Since that time, he has been home, recovering, had two ortho follow ups and has seen PT. Both follow ups showed that he was doing fantastic and his PT was also very happy with his progress.

This surgery has been the easiest/hardest surgery he has ever had. It was the easiest in respect to how the surgery went and how fast he has recovered as well as how he is progressing. It has been the hardest because of course, what was going on with the house during his surgery and the first part of his recovery and also because this surgery and recovery were foreign to me.

After 17 years with the Incredible Mr. David, I am used to pretty much anything that comes in the world of David, but this surgery has been different. It has really thrown me off my game. I had expectations of something much worse where the surgery was concerned and I was prepared for just that. When everything went well and we were out of the hospital in a fraction of the time that I was expecting, I think it totally threw me. This whole ordeal has been much less of an ordeal from beginning to end and much more like a minor speed bump as far as David's life goes. Truthfully though, David probably felt more of the "ordeal" than the rest of us, but he is a rock star and nothing gets him down.

As I said, the surgery and in hospital recovery were amazing, but again, the at home recovery has thrown me for a loop with my expectations vs. reality. Once I realized that I was not going to "break" David nor undo all that the surgery did, we were good. For the first month we went from the extreme of going back to school to staying closer to his bed than I would have liked but I was on a huge learning curve. Some days he was up and ready to go and other days, not so much. That mixed in with the crazy world we were living in that first month and I was really not pleased once school was out and summer had begun with where we were at as opposed to where "I thought" we should be. I felt that I wasn't doing enough to get him back up and going and that I was somehow failing him in his recovery. It was only after seeing the ortho and talking to PT that I started to feel like we were doing okay. I was also reminded that David underwent an extensive surgery and that it can take 8-12 months before he is even completely back to baseline. We are only 11 weeks out. Sigh......... 

The first of June, David was okayed to get back into his stander. He was still not okay to twist or turn at all as his bone was still healing. They said he wouldn't be completely released until after the 4th of July. Again, there are days that David is up and in that stander for half a day and other days when he seems out of sorts and really not up for all that goes into getting dressed, putting on his braces and moving into the stander and then staying there for hours on end. I feel for the kid and some days I am not up to dealing with his attitude. I have mentioned that he is a teenager....right? Special needs does not mean we don't have attitude!

As the month has progressed though, he is doing much better as is his stamina. I usually try to give him a couple of days a week of rest and then work him the rest of the time. It is exhausting for both of us. I know the rest of my family doesn't realize both the mental and physical fortitude that goes into this whole process for both David and I. Some days....exhausted doesn't even cover it.

Today and tomorrow I am doing my best to rest as starting Monday, David and I are going to hit this whole PT full force. By Wednesday he will be fully released to swim, ride his bike, use his walker, stander and anything else. Life is going to hit the fast lane and he will be my priority for the rest of the summer.

Soon we should be receiving his stair chair lift and as soon as that happens, I am moving David back upstairs to his room and all the things he loves. He has missed it terribly and has on more than one occasion tried to take his wheelchair up the stairs. When he does get back up there, he will have a wonderful surprise as his room will be all Spongebob!!! The room downstairs that he currently resides in will be his therapy room which he will be spending a lot of quality time in too.

Hopefully going forward, I will be a little better with the posts here and the updates. Hopefully there will be many new and wonderful goals met and miracles obtained, after all David is a rock star and he shows us that every single day. 

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! 

Cerebral Palsy Month, Surgery, Updates and Dates...Oh My!

Well, it is 4:30 a.m. and I can't sleep, so I guess it's a good time for a blog!

March has been cerebral palsy month and I guess it is fitting that all this chaos has fallen right smack dab during this month. It is a reminder of why I fight and who I fight for and the constant knowledge that I will never quit fighting.

I know it is crazy, but this whole eviction situation has had so many blessings connected with it. Yes, I have been a walking basket case and lost lots of sleep and eaten my feelings like crazy, but there have been some really great things come about during all of this. First and foremost....I have always known how great David was as a human being and how much I love this kid, but it has been so amazing to see how much others love him too. To see our community, church, family, friends and even complete strangers fight for my kid has had a profound affect on me. With all the negative in the world, these last weeks...I have been given a direct and clear view of the good, the kindness and the generosity of so many amazing people. It has made me even more determined to be the best human I can be going forward and to never let a day go by that I don't find some way to pay forward what has been given my son and as an extension me. I am so far beyond grateful, no one will ever know.

One of the other amazing gifts that this situation has given me is the fact that I have had little time to fixate on David's upcoming surgery. Had this house not taken over my every thought awake or asleep, it is quite possible I would have still been a basket case, but for a whole different reason.

David's surgery's make me crazy. Especially the long ones. I have seen the scary side to these things and I have found myself more than once at his bedside praying that he and I were not sharing our last moments together. I have been told that he is beyond critical and given pretty grim odds at his recovery in the past and in most cases I have sat there all alone, just him and I.... facing the unknown with every second counting. I am no stranger to any of it, so you can probably understand why the weeks, days and hours leading up to a big surgery....especially a potentially life altering surgery such as this...cause me great stress and a lot of worry and over-thinking about the "what ifs." This time though, there has been little time for any of that. I guess I have just had faith that he would be fine before, during and after the surgery. My focus has been that post surgery he would have his home to come home to and that other than the surgery, his world would sustain no more disruption or stress.

Now that we are so close to saving David's home and with the realization that his surgery is less than two weeks away, some of the realities and possibilities of this surgery are starting to creep in and yes....there is a bit of worry involved. I believe this maybe why I am blogging at this hour instead of sleeping.

This surgery is kind of a crap shoot from beginning to end as far as time under anesthetic, time in PICU and time in the hospital, not to mention actual healing and recovery time. I have spoken to literally dozens of people including his PT, his surgeon, his surgeons PA and actual spine fusion patients and all literally give you different times frames about everything. So what I have deducted is that this surgery and recovery largely depends on David and the doctors. The actual surgery itself  of course is dependent upon the skill of the surgeons and what they find going in. Luckily David's surgery is the first of their day (at 7 a.m.) so both surgeons should be fresh and on their game. The recovery though, that is all David. From experience I know that he has extreme determination, so hopefully he will push through and push himself to be on the quicker end of recovery, however.....whatever the case ends up being.....we are both in it for the long haul.

Soon, my worry roles will be reversed and I will have no time to worry or think about anything other than David. His surgery and recovery will take center stage and all else will have to take a back seat. That is where faith steps in and everything from the house to the surgery is put in God's hands and left there. Thank God we were given the extra time necessary to make everything happen (we now have until June 30th) and thank God for all the prayers that have helped us along the way.

So, these next couple of weeks I have no doubt, will fly by. As usual with his big surgeries, I will do my best to keep people updated on his surgery and his recovery process through this blog. David will be at Wesley Medical Center, 550 N. Hillside, Wichita, KS 67214. As soon as we have a room number I will let you know, so if you would like to send David a card, I know he would truly appreciate it. You can also send them to our home and if you would like that address please message me and I will give it to you.

This is a life changing time for David and I, but the journey has been full of amazing insight and even more amazing people. I am grateful to you all and I ask that you continue to pray for David and for his upcoming surgery. Prayer has been the greatest gift of all and we are grateful for every single one.

Finally, I was asked to post our fundraiser and donation information on his blog again so here it is. There will be a Quartermania Fundraiser on April 8th from 1:30 p.m. until 4:30 p.m. at Haysville West Middle School, 1956 W. Grande Ave, Haysville, KS. 

That same day from 5 p.m. to 7 p.m. there will be a bierock casserole dinner at Lauries Kitchen, 113 W. Main, Mulvane, KS. You can also pre-order the casserole by the 1/2 pan or pan and pickup on the day of the event.

And finally there will be a 20% fundraiser at Hurricane Sports Grill at 8641 W. 13th St. N, Suite 111, Wichita, KS on April 13th from 11 a.m. to 11 p.m. Twenty percent of all your food purchases will go to Save David's Home when you bring in a flyer or show a picture of the flyer on your phone.

Donations can be made through the YouCaring fund or you can donate through Carson Bank, P.O. Box 158, Mulvane, KS 67110. 

So there you have it. As I said, I will be posting daily updates on David's surgery and recovery and for those interested....his surgery will be April 10th. Please keep those prayers coming. 

Spinal Surgery and Stuff

It is so strange to see my sons face on a t-shirt design. It is absolutely surreal to be dealing with the "why" it is there.

We are knee deep in fundraiser plans and the bad thing about all of this is, life doesn't stop just because your life is in crisis. There is much to do to plan this fundraiser and I spent the better part of this day going to appointments and doing things for David that simply go along with the life of a special needs child. Today he had his pre-surgery physical therapy appointment. I went in there with plans that we would likely get him fitted for new orthotics (leg braces) but instead she just made sure that his current orthotics will keep him going until surgery. Why? Because after surgery, everything from his orthotics to his wheelchair to the kind of walker he uses will have to be changed. I had no idea.

In March, David will be having spine surgery to correct the curving of his spine which is common in kids with cerebral palsy. The curvature can happen in the upper spine, lower spine or mid spine. If uncorrected, as they enter adulthood, the curving can cause a moving and even crushing of organs like the heart and lungs.

In some kids and especially nonCP kids, the curvature can be fixed non-surgically with a back brace. David's CP however, made that impossible although we did try. So now we do surgery. David's curvature is in his lower spine and the surgery will either be a fusing of the vertebrae, a metal rod placement or both. The procedure will likely be extended a few inches above the curving area to get the best outcome.

You know when you have a chronically ill child with things such as cerebral palsy, seizure disorders, etc, there are three kinds of moms. You have the kind of mom who literally spends every waking hour on WebMD and chronic illness sites trying to soak up every ounce of knowledge and information she can on her child's illness/disease. These parents live, breathe and sleep their child's condition, constantly on the look out for the worst case scenario or at the very least, very sure that if something becomes an issue, they will catch it early.

Then you have the moms who just completely go with the flow and never even ask a question, check out a web page or check out anything in reference to their child's illness. They simply can't handle the what ifs, so it is just easier not to worry until they have a reason. This is kind of an ostrich with his head in the sand scenario and this becomes a huge issue when something does happen and the family is not prepared for that particular outcome. Ignorance is a poor excuse when you have a sick child.

Finally, you have moms like me. I am a cross between researcher mom and head in the sand mom. I ask a lot of questions of the physicians and medical professionals in Davids life, but I seldom research his illnesses simply because it would literally make me paranoid and insanely crazy. I know myself too way too well to put any of us through that. Besides, most of the information out there is so generalized  and if I am going to get information, I want it to be from professionals who know my son, have worked with my son and who can give me information pertaining to my son, not a generalization of the CP population. If I need the blanks filled in, then on rare occasions I will do the minutest of research but only on VERY rare occasions.

So today, I decided to get some info on his surgery from his physical therapist. My reasoning here is that she gets the kids in the aftermath of the surgery. She has a baseline idea of recovery time and what is entailed in the recovery. After talking with her, with all that is currently going on in our lives, I almost wished I hadn't. But....when talking to the right people....knowledge is power.

David previously has had two hip surgeries, which have put his hips back in their sockets and helped to reduce some of the tightness that CP kids often get in their muscles. These surgeries have been instrumental in helping him to get to the point in his life where he can get around pretty well on his walker. He still has to go long distances with his wheelchair, but he can make 1,000 or more steps per day. He also has Botox injections every 4 months to help the tightness in his hamstrings and help him to build muscle where there was originally nothing. He has fought through two really tough hip surgeries to get to this point. With one of those surgeries he almost died within hours of having the surgery. The recoveries have been long and difficult but each time his quality of life has improved and throughout both surgeries and recoveries he has maintained his smile and his joy for life.

Now this surgery. In the last few months I have noticed that David's right hip seems to be having trouble when he walks with his walker. This is due to his spine alignment. It throws his hip out badly and from what I understand, this causes a lot of pain. You would never know he is in pain as he walks as quickly as he can excitedly greeting anyone in his path, but there is no way (according to the doctor) that he is not in pain. It breaks my heart to think with all he has endured in his short 17 years that he might be in constant pain. This spine surgery should help his hip and the pain. Post surgery, his spine will be straight as a string and it will allow him no rotation in the upper body. This new straightness will help pull his hip in and when he walks, his body will be more in alignment. It will also affect his feet, knees and lower legs.

The surgery itself, depending on whether they do fusion, rod or both can last from 4-8 hours. This terrifies me because David and anesthesia don't get along well. It does awful things to his body when he is under for more than an hour or so. So, that in and of itself makes me cringe right down to my toes. Then following surgery and post op, he will likely be in PICU (pediatric intensive care) for 3-5 days. He will then be moved to the general pediatric floor where he can stay anywhere from 5-7 days. It wasn't until today that I fully realized that I could be moved into Davids hospital room for almost two weeks...and NO....I won't be leaving his side. 

Then comes the fun part where we have to figure out how to get him and his fragile healing spine home. It terrifies me to think of having to get him in my (non handicap accessible) van, getting him home and then getting him out again.

Once home David will have another 6-8 weeks of recovery. Slowly he will be given the okay to first sit up, then sit in a chair and then move to his stander where we will have to stretch everything from his shoulders to his feet. Once we are there, then he will start water physical therapy. Water therapy is amazing stuff and he will have a PT in the water helping to strengthen him and getting him back to normal. From there he will go back to regular PT where he will work out on the Total Gym, ride his bike and get back into walking with his walker again. It is a long process which will entail a lot of pain, effort and fortitude and it is definitely not for the weak of spirit. Did I mention this all makes me cringe? 

March 1st, is the day we see David's orthopedic surgeon and get the plans underway for this surgery. Within a couple of days of the appointment, if not the day of, we should have a date set for the surgery and my brain will be mush until he is completely recovered.

Perhaps this whole house thing has been a blessing in the fact that it has gone a long way in keeping me focused on things other than David's surgery, although today, the surgery issue came back and hit me full force. It is scary and I wish that it was the only thing in my world currently that I had to worry about. Unfortunately, it is not and I can't help but be just a little angry thinking that I hope those who put us in this situation never have to go through what they are putting us through right now.

In the midst of all of this upcoming surgery, the Save David's Home effort remains in affect. Plans for a fundraiser on March 10th are well underway. We are still selling two designs of t-shirts. One design is on the top of this page and we still have our YouCaring, Carson Bank Donation account and our Paypal account working to get enough money to save David's Home.

The greatest miracle for me would be if David's home was safe and sound and worry free before this surgery so that nothing would distract from his surgery and recovery. It is my greatest prayer and again today, I ask you all to pray like crazy, to share my blogs, the Save David's Home facebook page, t-shirt page and donation pages. I know I'm asking a lot, but trust me, I will pay it forward for the rest of my life.

So until tomorrow....happy Tuesday!

#savedavidshome
#fightfordavid