Summer Has Begun!

And so.....school is out and summer has begun. As I have previously talked about, this is the summer before Davids's senior year and we have plans. I have been watching both the news and the internet for free and fun things to do on the weekends and during the week, and so far, we have stayed very busy. 

Last week we went to see his physical therapist (PT) Valerie and she checked out his braces and did an eval to see where he was and what goals we needed to set and implement in the next six months. It was overall a very positive eval, as she had to widen the tops of his AFOs (orthotics) because......wait for it.....his calves have gained muscle!!!!!!! While his legs still aren't huge, they have definitely gained some muscle mass this year. 

Valerie was also impressed with his upper body strength. For a kid with cerebral palsy, he has amazing arm strength and a lot of that is due in great part to his teacher Mrs. Pittman and his para, Ms. Tony at school, who have made sure he does stretching and works out his muscles every chance he gets. Their hard work is paying off in spades. His upper body strength is making it so that he can do a lot of his own transfers, like from his bed to his wheelchair and his wheelchair to his stander. My back is very grateful. The funny thing is, in these transfers his arm strength is almost more important than his leg strength. 

He also showed off his attempts at walking with a Kay walker. David walked with a Kay walker until his spine surgery. Since then he has walked with a gait trainer walker, as his legs and hamstrings were not strong enough for the Kay walker. We have been working on strengthening his legs though, and for Valerie, he stood, turned around, and walked a few feet with the Kay walker. Immediately, that became one of our summer goals.....to get his legs strengthened and his hamstrings stretched to maybe get some Kay walker mobility back.

While talking to Valerie about what I needed to do to help him progress this summer, it occurred to me that I work out at Planet Fitness and PF has some phenomenal machines that might be just what the PT ordered to get him stronger, looser, and more mobile, so I ask Valerie what she thought. She agreed that some of the gym machines might help him a lot. So I wasted no time in talking to them at PF and asking them if I could bring him up there a couple of times a week to workout. They couldn't have been nicer. I told the GM that I wanted to bring him at a time when there weren't a lot of people there to distract him and that he wouldn't distract. She asked why and I said that David can get excited and loud and her exact words were, "So?! That's not an issue." If I didn't already love PF for everything they offer, the fact that she said that, made me almost tear up. You have no idea what that level of acceptance means to a mom of a special needs child. So either this week or next week, David will be my afternoon guest at PF!

As most of you already know, David is non-verbal. Over his lifetime, he has been able to say a very few words or sounds that sound like words, but he has always been able to get his point across when he needed or wanted something. Years ago, he learned a few signs (in sign language), such as more, please, thank you, want, and yes, and they have all stuck with him. It was enough to help him communicate, but that is pretty much where it ended. Truthfully, some sign language is just not feasible for David because of his cerebral palsy. Then about 6-8 weeks ago, I noticed that David was making movements with his hands that were very deliberate and repetitive. Before I even had a chance to ask, Ms. Tony told me that she was teaching him more words in sign language and that his whole attitude and demeanor were changing. Why? Because he now had a way to independently communicate. This makes him a whole lot less frustrated when he wants us to know something. 

Now he has had communication boards and a communication system on his iPad in the past, but he always fought the boards and the system. He would learn what he was forced to learn, but he had no real desire to initiate communication with them. Ms. Tony though, did what she does best, and made it a fun game for him, and viola, he is starting to independently sign. She is so dedicated to this process, that she even came to the house on her own time to show me the signs and teach me, so that over the summer, David wouldn't lose any ground. With her assistance, David was so excited to show me what he knew and I was so excited to see that this was something that not only gave him more independence but that he also really enjoyed. So now daily, he and I are working on the new signs and our newfound communication. Of course his niece Willow is picking it up faster than any of us, so I have no doubt that she will be a great asset in Davids's learning, further on down the line. 

So far, David's days are full of daily at-home PT, stretches, playing on his iPad, learning new signs, playing outside with his niece and nephew, and just enjoying the easy-going yet busy days of summer. As the weather continues to warm, there will also be pool time, walks, and outings to varied places. 

In case you can't tell, I am so grateful to all of those in David's life who see his potential and continue to push him to be his best self and live his best life. I am also grateful to the GM at PF, who seems to understand that his need to be able to work out is great, but there may be a bit of a learning curve at first on keeping his excitement to a minimum and keeping him focused on the task at hand. Having people like this in our lives is simply invaluable. 

Well, the summer break continues forward. Hoping by the time school starts again, we will be able to look back and call this our best summer so far. Most of all, I love that having a special summer before his senior year, is such a mainstream thing to do and that we are both enjoying every second of it. 

Until next time, may you stay cool, have fun and live your best life each and every day. 

 

Having and Helping a Child with Cerebral Palsy

One of the things I have been asked a lot over the years is, since I have a child with cerebral palsy, what I think is the most important thing a parent can do for the child's care so that they can thrive as much as possible. It's a great question and here are my thoughts.

First of all, let me say that CP is not a one size fits all illness. It effects different kids in different ways. Some it effects their upper extremities more, some their lower and some are equally effected all over. It weakens the muscles and either causes no tone or too much tone. Because of this, my recommendation to anyone who asks is, from the beginning get your child the best orthopedic specialist, the best neurologist and the best physical therapist you can find from day one. In some more remote areas, finding these top notch specialist may mean traveling and if that is the case, then I strongly suggest looking into a Shriner's Hospitals. Shriner's Hospitals are for kids and for specialty issues such as CP and the doctors at these hospitals are the best of the best. Shriner's also works with insurance if you have it, but if you don't, they foot the bill whether it is for therapy, examinations, surgeries, orthotics or anything that your child might need to give him/her the best outcome possible.

Let me stress to you that the sooner you get your CP child into a good ortho doc, the better. Immediately, even in infancy, they can start checking your child's tone, bones and movements and keep track of them as they progress through therapy, so if they find surgery to be necessary, they are on top of it. The second important thing....get in with a good PT as soon as possible. Even as a tiny baby, a physical therapist can start working with your child and help them to build muscle and work on their tone. Most PT's can now also cast children for orthotics and help provide them with any assistive equipment they need right from the start. Let's also not forget the neurologists part in all of this. Most CP kids do end up with some neurological deficits and like David, they have secondary issues to their CP, like Hydrocephalus and seizures. These require close follow ups with a neurologists. On down the line, the neurologists can also help with muscle issues too, such as Botox injections which help with tone and movement.

I can't emphasize  enough how important getting your CP child followed by these docs and working with a PT are. These will be key to how well your child progresses as they grow and how much mobility they have.

As your child goes to school, if it is a mainstream public school, you will find that most offer minimal therapies such as PT, OT(occupational therapy) and Speech as well as special education classes geared towards kids that are not in the mainstream. My suggestion here is that you seek therapies outside of the school district. Ideally, you can get a school PT that will work well with an outside PT, but seldom does this happen. One of the problems is that in a school setting, your child only gets about 15-20 minutes of PT every week to two weeks at school. This is not enough for a child that has severe issues and needs to be seen much more than this. If the school PT works with the outside PT, the outside PT usually sets up the therapy plan and the school PT makes sure that it is followed at the school level. In David's case, this didn't happen and we finally just went to outside PT. It has been a much better situation for him and he has become much more mobile since we have gone outside.

Another thing I feel that is so important is surgeries. I know that it is terrifying as a parent to think of your little one having surgery, especially if it is a long one with a long recovery period. Let me just say here though, that as scary as the knee and hip surgeries can be, the earlier they are done, the better chance your child has at moving around and even walking. We waited until David was 12 and that was almost too late. We didn't have a great ortho doc at the time and he didn't believe in surgery on kids unless it was a last resort. We finally found our way to Shriner's Hospital in St. Louis and from that day, David's life changed. His mobility would likely have been so much greater had he had surgery at 4 or 5 instead of at 12, however I am beyond grateful for the mobility that he does have.

Finally, let me say that any doctor or therapist you choose, should be a good fit for both your child and you. Do your homework and ask around. Other CP mom's in your area are a great resource for these kinds of things. If for any reason your child doesn't work well with a PT or you don't feel that your child is progressing well, it is not only your choice to change providers but also your duty to your child. The same goes for docs. If you or your child aren't comfortable with a doc or you don't feel like you are getting his or her best efforts with your child, then change. These docs and therapists are going to be with your child for a long time to come and you want the relationship to be one of confidence and trust.

Cerebral Palsy, though chronic, can be improved on greatly with the right therapies and the right medical professionals guiding your child's treatment. Every day new therapies, new medical advances and new possibilities are changing the lives of CP kids and their families all over the country.

When starting out as a CP parent, don't be afraid. Remember that from this day forward, you are your child's greatest resource and his or her greatest advocate. Never be afraid to question or change a doctor or therapist and when you find good ones.....listen, learn and soak up every bit of knowledge you can. This will give your CP kid the best chance for the greatest life possible. And that folks is my advice to you.

Until next time.......

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.......

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. 

Storms....They are a Brewing!

Well, today should be David's last full day of his hospital stay. This in all respects is a miracle. Especially when the original expectation was 10-14 days. We are beyond blessed.

David is getting to remember what a slave driver I am post surgery when it comes to rehabbing him. Yesterday when Dr. H told me that unless I tried to fold him in two, I pretty much was not going to damage him, it has given me more confidence in how I can move and interact with him physically.

When his hospital PT came in yesterday evening, he was really tired and I think there was pain involved but we did get him to stand with minimal human support and only holding on to his walker. It lasted only seconds before his legs began to shake, but it was a huge accomplishment.

Today there are storms brewing both inside and apparently outside too. I took my first venture outside of the pediatric floor and went to Walgreen's for a bit. The air is thick and the sky is darkish and hazy. It is the kind of weather my mom used to call "Tornado weather." I am very sure there are storms brewing as today is suppose to be in the upper 70s to low 80s and then tomorrow is supposed to be in the 30s. You don't have that kind of fluctuation without some kind of storm brewing.

Inside the hospital room there are storms brewing too. David's irritable side is starting to show it's ugly head as well as his stubbornness when it comes to PT. All morning he has been sullen and irritable causing consequences (taking the balloons away) for his actions. They have cut way back on his pain meds with the hope that tomorrow when we leave this place he will be on tylenol and ibuprofen and nothing more. I am sure that the combination of pain, the frustration of having a rod in his back and the fact that I am on top of him constantly telling him what to do is getting ready to cause a storm here too. Thank God we aren't here another 8-10 days!!!!

Through it all though, he is a trooper. PT came in this morning and his sullen face became even more sullen until I told him that if he did his PT like he was supposed to, that he could play with his balloons again. Although he still wasn't totally on board with the concept of having to work in pain, he did buckle down and do what was asked of him. Today he stood with even less help three times for 10 seconds each. Each time he was more and more weight baring which was amazing. On the third time though, his legs were becoming jelly and anymore would have been too much for him. However, he was not ready to go back to bed, so he opted for time in his wheelchair which is where he now sits, playing with his balloons while I blog about him. He seems comfortable and the sullenness is gone.....for now.

Yesterday he lost just about all of his tubes including another IV (down to one now), his drain and all of his heart monitors. All we have now is the O2 sat monitor, the occasional bp cuff and the IV. What a difference three days makes. On a side note, yesterday when they removed the drain, (btw....drains are part of the reason I could never be a nurse), I got to see the incision. Let me tell you, that is a thing of beauty. He has had a lot of surgeries, but I don't think he has ever had an incision so beautifully done. Once healed, even though the incision is about 14 inches long, it is so thin that the scar will be minimal. I was truly impressed.

So we are waiting on the storms. I can even feel the unrest in my own usually "vibrant" self. It's a feeling I usually look forward to this time of year. The static in the air mixed with the humidity and heat. Of course feeling it from a hospital room isn't great, but it could surely be so much worse so no complaints here.

Today is good and miraculous and once again I can find a million and one reasons to be grateful for.....even in the midst of the brewing storms. 

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!