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. 

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.

New Year Update!

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

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

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

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

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

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

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

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

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

Happy Tuesday everyone!