Toni, I just can't believe our gov't sometimes..................what a bunch of bull#@*!...Has Will had labs drawn lately? His Dr will know if it is encephalopathy or not. He will need to be seen anyway for the ear pain and swollen nodes. I'm sure he is absolutely tired of being "SICK" all the time. His attitude may be depression and frustration rearing it's ugly head. I can't say that I blame him but it is not productive. At this point he has to get thru the hard times one day at a time. Which I might add would be difficult for any adult let alone a young 21 year old. My heart just aches for him but we have to stay very strong and focused right now. If we give in to the "pity party" it becomes a vicious cycle for everyone. I am not trying to be harsh or critical in any way-just as realistic as I can be. God knows we all want him to be better and have no more sickness-------it is so hard being objective with our children isn't it? At least it is for me. We love them so very much and want everything to be OK but the reality is we can't fix everything. All we can do is the best we can.
Toni, I am so very happy that Will is feeling a little better right now. Your little girl sounds so cute and funny. It never ceases to amaze me that children are much smarter than we give them credit for. She knew intuitively what you needed-amazing. Kisses and hugs to you and yours.
I, too, am sorry I've not been able to be here lately, and my response will be short...but I just had to write. I'm so sorry that Will is not doing well. It does sound to me like encephalopathy. Have him make a doctor appt. and have some blood work done. Does he have a local doc, so you don't have to make that trip to Gainesville?
I believe SSI and Medicaid are tightening their budgets. It is more difficult for a young person to get those benefits. I do NOT believe he has to wait until after a transplant to get Medicaid, though...although he would need to stop working. Is it possible for him to move back with you temporarily? That might not be any better, though, as they would then consider the entire household's income. It truly sucks. If he has been turned down for SSI, he needs to wait 6 months to apply again...if it has gone to court. If not, get a lawyer. I don't recommend the ones who advertise on TV. The truly good ones don't need to do that...they get their clients and rep through word of mouth. Even so, don't expect him/her to go in there and fight for the client. He just takes care of the paperwork. Somehow, though, I think SS pays attention more if there's a lawyer involved, as they know then that the applicant is not going to just give up. I can tell you that anyone who has liver disease is going to start feeling chronically exhausted at some point. If you have any kind of counseling service in your area, that might help him. There is one here that charges on a sliding scale. My daughter went, and they only charged her $2 a visit. She is currently going to Clay County Behavioral Clinic and getting counseling for free...though she has Medicaid and that might be paying for it. Look in your Yellow Pages under Social Services.
This is my month of tests and doctor appts., and I'm also helping the fellow in Canada who is writing a book. That's time-consuming. I got a surprise from him yesterday, though--a nice vase of flowers was delivered! The card said it was in appreciation of all my time and effort. Sweet.
My thoughts and prayers are with you both.
I have had a chance to talk to an attorney about this SSI and MEDICAID and the advice I recieved was to write our Govenor and whom ever else that will listen or move to another county as the disability guidelines are different elsewhere. We have to keep appealing but, Medicaid probably will not pick him up until 2010, however she did say when we appeal this time request to go in front of the board. SSI will not consider him disabled until post transplant and he does have to be out of work for atleast 6 months before he's approved He has not worked since Oct. 19th. I'm so confused, ANGRY,and to say the least very scared! Thanks to All of you here, the wonderful friends and the family support that we recieve! I don't know how I would make it without going totally insane! You are All in our Thoughts and Prayers daily. Oh and yes I have talked to Dr. and we have an apt. now for Feb.22nd. Will write more later.Again Thanks!
Huggs and Smooches,