I have some good news to report--I received a letter this past weekend from Medicaid stating that Theo qualifies for full Medicaid coverage from 9/1/05 on. When I called, the caseworker told me that after Social Security approves him for disability, they will cover from the date of disability which is 08/20/05--the day we went to the ER and the tumor was discovered. In the meantime, they had me fill out another form for the state of VA disabilty determination which I sent in yesterday. So, with the SSI qualification pending, and of course, they never really know how long anything will take, the state form will also be in the works. Whichever one goes through first will determine his disability status and allow Medicaid to pay from 8/20 on. The paydate starts on 9/1 because he began receiving hospice care in September--even though he didn't start getting the hospice care until 9/19 when we were discharged, they start from the beginning of the month. I am confident that the disability qulification will go through as well--I don't see how it couldn't-- which means that all our hospital bills will be paid through Medicaid. I am so thankful for that. The money in his savings account will go to pay for his future expenses and any expenses we may have--rent, bills, etc. if I have to be out of work for an extended period depending on his condition later on. I can only take off work for 2 weeks at a time because I used all my Family Medical Leave time and my Paid Time Off (PTO) hours (they include vacation, sick, emergency, whatever) when I took off for maternity leave for three months after he was born. Remember, we rushed him to the ER the Saturday before I was supposed to start back my regular work schedule on August 22. Instead, Theo was having his brain surgery that day. I am accruing leave hours weekly now, but because I used up the allowed FMLA time during the first months of his life, I am restricted to the 2 week limit, unless I take time off (beyond that 2 weeks) without pay, but that can only be for up to 2 more weeks. Everybody at work has been really great with my schedule and being as flexible as possible, so I'm not saying any of this in any meanspirited way, that's just the policy. Under those rules, I could have about a month off without losing my current position and benefits, etc. We have no idea what his situation will be like further down the road. So, I am glad that we will have a little extra money in his account to fall back on if we need it. Right now we have about $5000 in his account. We are going to continue to save as much as we can, because I don't know how much we might need for later, and obviously I didn't have any life insurance for him. Just about a week before all this happened I got one of those things from Gerber in the mail---pay $1 and get a $10,000 life insurance policy for your child that grows with him over the years, blah , blah, you know, you've probably seen them. And I looked at it and read it and thought about doing it and then I thought, "Why would anybody need to get life insurance for a baby? They can get it when they grow up" and I threw it out. Now I know why people get life insurance for their children. It's an awful think to think about. A book our hospital social worker gave us mentioned an interesting thing; we have a word for what you call somebody when they lose a spouse--a widow or a widower--and a word for children who lose their parents--orphan--but there is no word for a parent who loses a child. It is such a horrible thing that we don't even have a word for it in the English language. And I know we haven't lost him yet, but I still have to think about these things. I can't avoid thinking about them.
Today he has had a good day, he is sleeping right now. He just finished his afternoon feeding. He hasn't been gagging as much but he does on occasion so we have continued to run his feeds fairly slowly. He did throw up once this past weekend. He still has times when he gets very irritated and cry inconsolably for long periods and we don't know why--and then there are times that he will calm down quickly when he is held and loved on. He is pretty much on his own schedule where he sleeps for 3 or 4 hours and then is awake for a few hours, sometimes he might be awake for 3 hours or sometimes longer. He generally sleeps in the evening from 6:00 until about 8:00 and then falls asleep again till around 10:00 or so. Then he'll fall sleep around 1:00 or 2:00 a.m. and almost always wakes up around 4:30 or 5:00 a.m. and stays awake till about 6:30 in the morning. It's pretty tiring for whichever one of us is staying downstairs with him (we take turns--whichever one of us is working the next day sleeps in the bed), but we are able to sleep a few hours at a time downstairs with him at differnt times throughout the night, getting up when he does and also at 3:00 a.m. to give his medicine. I have decided to get a futon to put downstairs, the loveseat is getting less tolerable the longer we do this. It seems to be the best thing for Theo right now though. We are both doing as well as we can. Again, we have days that are better than others, and we have days that are very sad and difficult. We can only go day by day though.
Please keep us in your thoughts and prayers.
I'll keep you posted--