Tuesday, October 25, 2005

Medicaid Approved 10/25/05

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--

Friday, October 21, 2005


Theo is continuing to tolerate his new tube with no gagging or throwing up so that's some good news. Jamie has been staying downstairs with him the last few nights as I have been working and he has been off this week for fall break. I will stay downstairs with Theo tonight and Saturday to give Jamie some rest. I am thinking of getting a futon for downstairs so maybe we can both sleep downstairs with him or at the very least so that which ever one of us is sleeping down there can have a real bed to sleep in. We have two loveseats and no full length couch, so it's kind of hard to get any sleep. Not that we sleep all that much when we are down there with him, but whether he is upstairs or downstairs, we still have to get up at the end of his midnight feeding (now around 1:45 since we are slowing down his feeds) and at 4:00 a.m. to give his medicine then. The main reason for continuing to keep him downstairs is that we discovered that when we don't transition him upstairs to his crib, he cries much less at night and even when he does cry, he is much easier to calm than when he was sleeping upstairs in his bedroom. I don't know why. I guess it's just that he spends so much time downstairs that the environment is more familiar to him. But it is definitely warmer downstairs throughout the winter so we are thinking we will probably just let him stay downstairs indefinitely.

We both continue to have good days and bad days--or kind of ok days and bad days. I don't think we actually have good days at all. Some days are better than others. This doesn't get any easier. I have really been suffering a major spiritual crisis through all this. I know some people find that their relationship with God is strengthened through trials like these, but I feel completely abandoned and have actually for the first time in my life entertained the notion that perhaps there really is no god--not one that cares about what we're going through anyway. Or at the very least, can't intervene, otherwise why wouldn't he do so? The why questions beginning with us and with Theo, just expand to all the people who have been hurt, killed, left homeless and injured not only recently in New Orleans, and now the earthquakes, but all over the world. The suffering, the pain, lonlieness, illness, hunger, poverty, sadness, grief, of children and adults all over the world, all the time, just goes on and on and is everpresent. I see these things on the news (when I watch the news--I find I have very little desire to actually know what is going on outside our world of Theo most of the time) and I have a new sense of empathy and understanding of how parents feel who have lost their children, how people must feel when they have lost everything. I just can't understand it. Of course I knew that pain and suffering existed before this, but somehow I was able to find some kind of place for it, some explanation or maybe I just really ignored the reality of it all. Maybe it was just plain igonorance. I viewed pain and suffering as some kind of cosmic balancing, the way things somehow had to be until we as human beings found some way of being as a people consistently compassionate, caring, loving, more divine in our nature. I saw suffering and death as sad, difficult, painful, but necessary. A part of life to be accepted and even welcomed on some cosmic level as part of the divine cycle of life, death and re-birth. Now I know what it's like to feel that kind of helpless anguish, knowing there is absolutely nothing I can do and those feelings, this experience has called into question my most deeply held convictions, which I guess as it turns out, may not be all that deeply held. And while I still believe that the cycle of life-death-rebirth are part of a divine or a Universal mechanism of sorts, it feels personal to me now and I don't much like it. It hurts and I just want to continue to scream out how unfair it is. I feel much more fragile. I feel that all of us are much more fragile than I thought, more fragile, more special, more in need of caring and love, and sadly, I feel that God isn't offering much in the way of love and support. Unless it's through all of you, all of us. The divine nature of others comes more clear in these situations, but God himself or herself or whatever it is, feels absent. There is that part of me that knows that God is not responsible for human suffering, that God doesn't cause these things, and I want to hold on to my belief that God is love and wants to help us, but emotionally, I can't get past all the teachings of my childhood that told me "nothing is impossible wih God", that "by His stripes we are healed", etc, etc. And none of those things has been true in our situation. If those things are true, then why wasn't my baby healed? Why did this happen in the first place? Why do terrible things happen, especially to babies and children, ever? And why when people pray and pray, are those prayers not answered? We didn't believe hard enough? Didn't have enough faith? Those are the questions that go through my mind when I think on these things. And I have a hard time accepting that it's "God's plan" because what kind of plan is it then? Or that I just don't see the whole picture, that there is a reason for it all, we just can't know what it is. And I guess I do believe there is a reason, but I can't imagine a reason good enough. I can't believe anybody including God, could come to me and say, "Well, here's the reason Karla...." and I would go, "Oh, well yes, that is a good reason". I know it's because I'm human and all the reasons may be good and valid on some other higher plane where humanity and our wants and needs are not important or even relevant, but I'm not there right now, I'm here and being here right now just flat out sucks. It's just a circle of questions that can't be answered. All my why questions don't solve anything or provide any answers or even make me feel better. I know that it is just going to take a lot of time to heal and it is nowhere near being over.

I just ask that all of you continue to pray for us, because even feeling the way I do, spiritually bereft, I know that prayer and meditation, positive thoughts and energies do have a positive effect. We effect our world and others through our thoughts and actions.
So please do continue to think of us and send us your love and support. We need it. I need it.


Monday, October 17, 2005


Since Thursday, Theo has been having problems with choking and spitting up. We think it might have something to do with his tube which was changed on that day. One of our home health nurses came over on Saturday and called the doctor who suggested we feed him very slowly. The nurse is coming by again today. She might just take the tube out and put a new one in again. Since we changed the tube he has had problems. One of us has had to sit up with him all night every night to make sure that he doesn't choke or throw up. We are just taking turns each night. Since I worked today, Jamie stayed up last night. We have had him on really slow feeds, like the doctor suggested and he is getting only 35 ml per hour, so it's nearly continuous all through the day, keeping food in his stomach just a tiny bit all the time so he won't throw it up. He is doing ok with that slow feed but every time we tried to speed it up a little so we can begin spacing the feedings out again, he began choking and gagging.

I had an appointment with the social security office today to apply for SSI (supplemental security income). I hope we will qualify because if he gets that, he automatically gets Medicaid. Plus any extra income will help us with the medical bills and any future expenses. But they told me today that they don't know whether we will qualify or not as it is a "needs based" program and we might have too much income. He couldn't tell what "too mcuh" is because each case is determined individually. We are in no way rich people. So the fact that we might make too much money is just ridiculous. Of course, they don't even ask what kind of monthly expenses we have or how much medical bills we have piled up, so I don't see how they can properly asses need when they don't know what our expenses are or what we owe. Anyway--if he does qualify, they will pay retro active benefits from the time of diagnosis, so that will be helpful, but we won't even know if he qualifies for up to 120 days. Though the guy said it could be sooner. You never know. It was really hard to go in there and sit there and talk about his case, hand over the medical records with the pages and pages of medication lists and tests that he recieved since his admittance date. Just being there in that situation, was one more heartbreaking thing. I haven't heard anything from the Medicaid office, though I did follow up with another phone call Friday. We got our first bill from the hospital this past week.

We continue to recieve periodic cards and checks from people with words of encouragement and financial gifts for Theo's account and we appreciate it so much. Jamie is looking into a charitable trust fund rather than the account we have now which is a custodial savings account. A charitable trust does the same things--takes care of medical expenses, needs, Theo related expenses, but I think donations can be tax deductible and there may be other benefits. We are trying to find out. Either way, all the money is going into his savings account right now.

I am going through a very hard time right now--it just seems some days are much worse, harder, than others. Please keep us in your thoughts and prayers.

Love to all,

Wednesday, October 12, 2005


I just wanted to let everyone know that Theo had a very peaceful and calm day yesterday and fell asleep around 11:00 p.m. for bedtime (as opposed to many hours later) with very little crying. I don't know what the difference was, or whta made him more calm than he has been. Actually he is a little constipated (hasn't poo'd since day before yesterday) so you'd think he would be more fussy. He has had an ok day so far today, hopefully he will have another good night. Jamie's sister Meg is visiting tonight so she is staying home with Theo and we are going out to dinner. Which will be really nice, but it's hard too because anytime I am away from home, I only want to be back there with him. Even when I know I am not really missing anything and that he is doing fine.

I will post again soon to let you all know how things are going.

Love to all,

Monday, October 10, 2005


I keep trying to think of new things to write without sounding too depressed and sad all the time and have a really hard time coming up with anything. We're doing ok I guess. As best we can. Theo continues to do ok. Not a lot of changes with him right now. He has continued to have a lot of problems settling down at night and we haven't been getting a lot of sleep. Some people have suggested keeping him awake during the day, but that's really hard to do since he can't really be engaged. Keeping him awake when he doesn't want to be would involve irritating him, making him angry or upset. He gets upset (and wakes up) when we do anything to disturb him such as change his diaper, bathe him, put clothes on him, pick him up (he calms quickly because he realizes he likes to be held), moving him, etc. And when we do those things--even when they are necessary--it's just really hard knowing that we are causing him any kind of pain at all--whether it's real physical pain or psychological or whatever, he clearly gets upset. We don't want to bother him when he is sleeping or calm no matter what time of day it is. We have had a couple days and nights where if he was awake, he was crying almost non-stop. Those times are really difficult. No parent wants to see their child cry and when it seems there is nothing you can do to help, it's even worse. It isn't always like that, there are times when he is awake and peaceful, I guess it's just that the difficult moments are more vivid and stay with me longer. During supervision for my counseling license, we talked about memories of trauma and how traumatic memories are stored in a different area of the brain than regular memories. When they are recalled, they come in flashes, like snapshots, one after the other, or like a roll of film played frame by frame. So when those moments are recalled, it's with more clarity and impact. Other memories are recalled like the film being played at regular speed. They play out and are stored away again with no problems. Traumatic memories have more clarity and immediate impact because of the way our brains store them. So maybe it's kind of like that. I know that when I think back over these last months, I have many memories that are like snapshots, that come back to me with that kind of stunning clarity. Flashes of the doctor coming in to tell me about the "blood on de brain", riding in the ambulance with Theo and the EMTs, looking down at Theo hooked up to a million wires, Theo getting stuck with needles, Theo intubated, Theo getting chemo, rushing down for emergency surgery to remove the tumor, looking at the CT scan that showed his cerbral cortex destroyed. Those things are always there in the back of my mind, popping up at random moments. They are mingled with thoughts of memories we'll never have, of him growing up, laughing, playing, running, and then there is the continuing heartbreak of the memories of Theo before the tumor. Of Theo smiling at us, Theo just beginning to imitate our sounds and facial expressions. All the new, sweet little changes that were happening more freqeuntly, day by day as he grew. Before the tumor. Even the very day everything happened. That morning, before he threw up the first time, he fed, he laid in bed with me, he smiled at me, laughing up at me, making his little "oh, oh, oh" sounds as I talked to him, Theo moving around, squirming on the bed, happy, joyful. Except we know that there was no "before the tumor" really, it was there from the beginning, growing. I look at pictures of him now, from his birth day on, knowing that it was there all the time, stupidly growing, dividing it's greedy cells inside his little brain. This stupid bunch of cells that have no purpose whatsoever except to divide and grow and divide and grow without ever stopping until they kill the very tissue that is giving them life. It makes me sick. Sick with grief and loss and angry that such a thing as cancer exists. But all that only brings me back to the "why " questions that cannot be answered. No reason for it at all. Not that we will ever know in this lifetime.

The next MRI is Nov. 30 and until then, we are just waiting, taking care of him as best we can, and just waiting to see what the pictures will show. Trying to make the best of the time we have with our precious baby.

I am still ever thankful and continue to be touched by the amount of love and support we receive from our friends and family. My mom visited this weekend and it was really nice to have her here. She is really good with Theo and he likes to hear her talk to him. Jamie's sister is coming to visit this week and we constantly have friends who come to visit us as well as my Dad and Jennifer who live really close by and come visit every week. People all over the country and the world continue to pray for us and send us positive energy. Which is welcome and good, because I have lost the ability or inclination to pray for anything. All I can do is offer up my love for Theo and all of my actions in caring for him as my prayers. That is all I can do and all that really matters. Any prayer that I might utter now would be only empty words with no meaning or feeling. But knowing that about my own heart doesn't mean that I don't know that the prayers and love and energies of other people on our behalf are meaningful and do touch us and help us in so many ways.
Because I can't do it is even more reason to ask for that gift from all of you.

Love to you all,

Monday, October 03, 2005


Sorry it’s been so long since my last post. Theo is doing about the same. He comes off the antibiotic pump today. It will be nice not to have to schlep that thing around or have to worry about forgetting to pick it up before I pick him up (I did that a couple times and then agonized for a second thinking I pulled the line out—that didn’t happen though).
He has been having some inconsolable crying spells lately—crying for a couple or three hours without our being about able to calm him down. This usually happens just before bedtime, but also happens during the day sometimes too. We can’t figure out what exactly might be causing these. He may just be uncomfortable or irritable, it may just be his brain. Dr. Ward (our neurosurgeon) would probably say “that’s just his functioning level, these kids do that”. Meaning kids with brain damage at the level Theo has. Jamie thinks maybe he is “remembering” all the trauma he has gone through. It is possible I guess. All cells in our bodies have a certain kind of memory. In some way, maybe he is remembering, I hope not. Just like I hope he doesn't have bad dreams. I can tell when he is dreaming. During these times when he cries for long periods, he doesn’t seem to be hurting physically, but it seems like a mad, sad or just unhappy cry. We usually give him his ativan during these times, but it doesn’t always work. Sometimes he will calm down and almost stop, but then tense up and start crying again. I can barely stand it when he cries like that without stopping. No matter what we do to try to help him, he doesn’t calm down, usually he wil fall asleep eventually. It makes me cry too once it goes on for a while. Other than these times, he is doing ok. We are still just going day by day.
Yesterday (Sunday) was a really hard day for me. I don’t know why. I went to a friend’s baby shower on Saturday, and it didn’t make me feel too bad. I expected it might be more diffictl than it was, but it went ok. Maybe I just didn’t feel it until Sunday. Pregnant women don't really bother me. I usually have a really hard time seeing little boys or babies around Theo’s age, or little blond boys, toddler age. That’s really hard for me. It’s like a knife in my heart, seeing those little boys who always make me think of Theo and all the things he will necer experience. All the things I will never see him do. How he will never put his little arms around my neck, I’ll never see him smile at me again, never hear him say Mama or Daddy or anything else. He’ll never play with me or with other children. I can just go on and on thinking about all the things he won’t do or see and the things we will miss. But I try not to. I try not to think about those things. But sometimes I can’t help it. I just can’t understand it. I can’t understand why things like this have to happen to anyone. But then when I get caught up in that train of thought, it doesn’t help either. I can ask why and search for an answer the rest of my life and I won’t find one.

I have applied for Medicaid (and have already been told that our income is too high to get full Medicaid coverage). We may be eligible for what they call a "spend-down" which is where Medicaid helps to defray some of the costs that insurance won't pay. Our insurance will probably pay around 70 to 80%, but that still leaves quite a bit eft over. I have also applied for SSI(supplemental security income)from social security for Theo. This is monthly money available for children and adults with disabilities. We have an appointment at the social security office on October 17th. If he gets the social security, he will automatically get Medicaid. His hospital bills total around $280,000. The Medicaid guy told me today that social security may be able to pay some retro-active money. It's strange, but I'm not too worried about the bills. I feel somehow, they will be taken care of. I hope the medicaid and SSI will provide some help. I'll keep you updated on the status.

We are so very apreciative of the gifts we have recieved (emotional, spiritual, physical, monetary, edible, etc) and those we continue to recieve. We continue to be thankful for the love and support of our friends.

As always, I'll keep you updated with news of Theo and how we are doing.