I'm sorry I have not been here for such a long time. So much has happened since we were here last.
Tim is doing well-better than expected. I can still him his roar of laughter from his room even with his door close. My son, Timothy, now 23 yrs old is so positive about life and full of laughter that he is not let letting this disease get to him.
In August of 2010, we managed to convince him that the trach/ventilator would be best for him due to the issues of the carbon dioxide in his blood was rising which could had "fried" the brain. With love for his life and so desperately wanted to live, he gave in and went under. For a month we did not hear his voice but now we can't get him to shut up. (LOL) Since being on the ventilator, he has gained over 40lbs which they were so desperately trying to do prior. But learning the ups and downs of a ventilator was quite an experience but even I who was so frightened of it find that it was extremely easy to use. His ventilator is the size of a laptop but now we are having challenges of keeping it on his wheelchair. So we are researching of finding medal shelves to be added to his chair to hold the battery-which is heavier then the chair itself...lol..and something safe to put the ventilator on/into.
In February of 2011 we opened a new SPECIAL NEEDS TRUST ACCOUNT for Timothy. This account will not affect Tim's SSI or Medicaid. We raise money to help with medical equipment and supplies not covered by his insurance including Medicare and Medicaid. We are currently trying to raise money for an external wheelchair lift and some special medal shelving for his wheel chair for his ventilator. We are using all kinds of methods to raise funds, including Thirty One, Pink Zebra, Power Flower and on Black Friday, Walmart is helping us as well.
In April of 2011- I had a stroke. I'm still in the recovering mode but my whole left side from head to toe is like ...um...hard to describe like frost bite. Numb, tintgling, burning, really hard to describe Listen up....my stroke was due to neglience on my part of concentrating so much on Timothy that I neglected to care for my son Timothy. I had concentrated so much on him that whooops- suddenly I'm slammed into the hospital for what at first they thought maybe I had MS due to the family history of it till the MRI came back with a different story. I was taking my meds- that wasn't the issue. But I was in pain from my surgery, and instead of taking the necessary breaks I needed, the whole thing caught up to me. Part of me believes that it is from the surgery I just had. We never know when a stroke will hit us and sometimes yes it is due to other medical reasons. But if not caught on time and treated properly, there can be devastation It was not the issues of meds as I took those everyday.
Anyhow so this has been a learning experience for Tim and I and right now we are doing ok. Just pray for us.
Hope all is well with everyone.