Monday, October 03, 2005

10/3/2005

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.
--Love,
Karla

1 comment:

Betty said...

Dear Karla,
Your last post tells the stark realties of your situation and notes some hopelessness that I believe is premature. The MRI in Nov. will tell you more, but for now, please do not give up hope. I spoke with my boss who is a Neuropsychologist and she says there are some reports of children as young as Theo with brain trauma that have recovered to a very high functioning level. There was one report of a child that had the entire left side of the brain removed and the right side took up the tasks of the missing side. The Doc said that it all depends on where the damage occurred in the brain. She is going to get me some reports regarding, I think she said "plasticity" and another word I will not attempt. I will mail them to you as soon as she gives them to me and I can get the copies made. If you have not already, please try to contact a support group of families who are going through the same things that you are, people who can truly understand your sorrow. There is a website for NAMI or the National Alliance for the Mentally Ill, there should be a local county NAMI group in your area. I realize there is a big difference between mental illness and brain injury, but they may be able to get some contacts for you. And PLEASE, dear Karla, do not give up the faith.
Betty