Yes, I know....it has been eons since there was a David update. My bad. No truly.....my bad! I have redirected my efforts on life and because of that, blogging was kind of left out in the cold. I hope to be better in 2017, but I make no promises as I plan on being very busy off-line...so we shall see.
So what is David up to? Well, he is nearly as tall as I am. By most human standards, I am short but for David, he has grown leaps and bounds. He turned 16 in September and he started to school four days per week at the high school back in August. This was extraordinary, as if you remember last school year, Davids seizures were getting a little out of control and scary and he had to be taken out of school for several months. When he did go back in February 2016, he went back to a four day schedule, taking Friday's off as that was his therapy day at Heartspring.
Through the summer, David gained a lot of strength and his seizures became almost non-existent. His meds and his vagal nerve stimulator (VNS) were keeping them well controlled. He was also getting much stronger with his walker and his bike. It was the first time in many years that we were able to feel some kind of normal as a family.
When school started in August, God was obviously answering prayers as we were blessed with the most amazing teacher for David. She actively volunteered to go to his out of school physical therapy both during the summer and during school. She attentively listened to everything his PT (physical therapist) said and went back to school and implemented every detail into his school life. Because of this, David went from being mostly wheelchair bound during school to walking most of his day with his walker and without wheelchair assistance.
This school year has been one of the best David has ever had. Until November, he had missed almost no school and was doing absolutely wonderful. In November and December, he had a few seizure issues (mostly from a growth spurt and out growing the therapeutic levels of his meds) and he caught a couple of bugs that were running around the school, but all in all.....his first semester was nothing short of a miracle as far as school years go.
One thing that both was amazing and terrifying all at once for me, was the fact that in December, his PT told us that December would be his last PT for awhile. When she told me, I could literally feel my heart almost stop. I had no idea how much "I" had emotionally come to rely on his weekly therapy with her and how much she had become my compass on how he was doing physically and how I was doing as his mother. Sound silly? Trust me, when you have a special needs child, you get your reassurance whenever and wherever you can. Although his no longer going to PT (for awhile anyway) felt like a gut punch to me, for him it was an amazing thing. This meant that all of the goals she had set for him....he had met. As she explained it to me while I hyperventilated.....he had gone as far as he could at his current strength level. In order for insurance not to come in and control his therapy now that he had met his goals, she was voluntarily backing off his therapy so that if for some reason he had a set back, he could get right back in. However, if she didn't back off now, insurance would likely mandate that he couldn't be seen again for a year and if he would happen to need PT in that year....he would be out of luck. This way too, we have a whole new semester (few months) to work on his strength both at home and at school. As his strength grows and at the rate he is going....by May or June he can be re-evaluated and if he is ready, a whole new set of goals can be set such as climbing stairs, standing up with the help of only one hand or even possibly taking steps on his own without walker assistance. Then he can return to PT.
I know it is an amazing thing that he has made it so far and continues to progress, but looking at this new year without regular, weekly PT is still a bit terrifying to me. She assured me however, that I can handle this. I hope she is right...and because we will not be going to PT on Fridays....David will now be back in school on a Monday through Friday schedule. Routine is a wonderful thing for him, but I have to admit that I will miss our late mornings on Fridays and not feeling rushed to be out the door. However....it is a small price to pay to see David happy, healthy and progressing.
Christmas break has been a good one this year. As usual we have all passed multiple bugs back and forth and because our house has been fuller this year than normal, there seem to have been more bugs than ever before, but through it all, David has stayed pretty healthy.
Now that the new year is here, my work is really laid out for me. Since we won't have weekly PT, we have much that must be done to strengthen him both at home and at school. He will actually go from 1 hour once a week to at least 30 minutes every day. He will have to keep up with his walking and it was even suggested that with some of the strengthening he needs both upper and lower body, that perhaps I look into a gym membership for him. We will see if that is even possible.
Yes, I am feeling a bit overwhelmed but in our world right now, things are fine. We are blessed to have all that we have and David continues to be a trouper, fighting a condition every day that would crumble even the strongest of most of us.
So there you have it. We are starting the new year on a positive note and hope to maintain the boring monotony that is currently our lives for a long time to come. And perhaps....this all will give me a little more time for writing the occasional update more often. Who knows....only time will tell.
