Updates and Moving Forward

There have been some mutterings on facebook(fb) that there have been no real updates on the Incredible Mr. David in awhile. Looking back at this blog....apparently they are right. Other than the occasional post or two....I really haven't been very good about keeping people up to date....so today I will remedy the situation and give full David disclosure.

Surgery and recovery update: David went back to Shriners for a check up in October. I will admit that I was terrified of this visit as it seemed to me his progress was not what was expected. He used his wheelchair 90% of the time and the other 10%  he was being physically lifted or carried by someone. I just knew the doctor was going to tell me that he had gone through all of this pain and suffering for nothing and that he was wheelchair bound for life. I literally lost sleep and had more than a few crying break downs over it all.

When October came about....Zachary was not able to make the trip with us, so Thiry (an amazing friend) went instead. I was so glad she was there because I knew if the news was not good and I started to break....she would instantly put me back together whether with words or a good swift slap upside the head. Zachary did not wield such power. Amazingly the doctor said that David's x-rays were "beautiful" and that he was doing wonderfully. It seems that I had my information mixed up. The things I thought he should be doing at this point were things that were not expected for another six months. Currently they were just looking for his legs and knees to be as straight as possible (and they were almost there). They did not expect him to be standing and certainly not walking. Apparently he was right where he needed to be...and I was freaking for nothing. The doctor reminded me that we were only six months out on his surgery and that it had been a very extensive surgery. She was very pleased with what she was seeing and she said everything else would come in time. She then sent us on our way and told us to come back in January.

You can't imagine the relief I felt coming home. It was like a load had been lifted off my mind and where unbelievable fear and stress had been....it had now been replaced with perspective and peace. Since....David has taken off and started doing things like crawling and climbing the steps on his knees again. He also easily gets on and off furniture and is doing well in school. All the things the doctor said would happen in time.....seem to be happening. His January appointment has already been rescheduled twice and is now currently set for February 22nd. At this appointment we hope to hear when they plan on doing surgery to take out the metal plates in his knees and hip and also what if any kind of special leg/hip bracing he will need for the next leg of his journey. It seems so strange that a year ago this time....we were just starting this journey and it was such a strange and foreign one with so many questions and what ifs. Now....here we are nine months later and we are well on the road to walking. Amazing!

The VNS: If you remember....in September David had a little doo hickey put in just inside his chest wall called a vagel nerve stimulator or VNS. It's purpose was to stop his seizure activity and hopefully be able to ween him off at least some and maybe even all of his current regimen of seizure meds. Since the VNS was put in....we have yet to be able to coordinate a return visit to start the weening of meds, but the stimulator has been amazing. In four months David has only had a couple of episodes. Other than that....he has been seizure free. While he still has his moments of upset (usually during physical therapy) for the most part...his attitude and temperament have changed immensely. No longer does he seem to do much screaming, biting and pulling hair when frustrated or upset. He also is much quieter....not having frequent boughts of unexpected yelling. Much of the change is attributed to the fact that his brain is not constantly firing silent seizures or not so silent seizures. According to the doctor....if we are able to start weening off some of the more attitude changing seizure meds....we should be seeing even more change.

Speaking of seizures....I guess it is rather appropriate that I am giving this update on David today. Five years ago today is the day that I walked in and found David on the floor, basically unconscious, jerking and looking pale as death. I had no idea what was wrong and truly thought he was dying. I could get no response from him and his eyes...barely open would only dart back and forth from side to side. Once EMS was called and he was admitted to the PICU....that was when I learned he had suffered a febrial seizure. It was the first seizure he had had since his days in the NICU. Little did I know then that this would be the start of a new way of life for David and the entire family. Since that day he has only suffered one more full on febrial seizure....but many many short lived but none the less scary seizures and many many trips to the ER. If the ER gave out hospital frequent flyer points.....by now we should be able to stay an entire month for free.

As far as David's other issues go: he is doing well. I often see other parents of Cerebral Palsy (CP) kids post on facebook about their child being in the hospital, being sick or having some issue related to their CP and I always think....there but for the Grace of God...... It also brings home the fact that David has much hardware in his body from his shunt, to his baclofen pump and his VNS to all the plates and screws from his surgery. Any of these could result in infection. Any of them could suddenly malfunction, quit or just simply cause his body problems. Unfortunately....that is just the nature of the beast when you are dealing with CP and all of its intricacies. However, you can't fear the what ifs and stop living nor stop letting him live. So you find your normal and move on.

David of late has had his own version of the flu. He has run temp and had congestion. He has been tired and gotten his days and nights a bit mixed up....but he seems to be much better. We now are only dealing with a bit of congestion....and after being out of school a week....I think tomorrow he will be back. I know it is something he is looking forward to and I am sure he has been missed.

So as you see....the Incredible Mr. David is doing well. Soon he will be on the next leg of his journey to walk and moving forward to be the most independent he can be. Add that to being seizure free and the possibility of being med free and life is looking good. I hope to be a little better about updates in 2013 and am greatly looking forward to a year of David learning to walk!