Saturday, December 31, 2005

12/31/2005 New Year's Eve

I added to the page Theo's photo with Santa. We went to have the picture taken following his doctor appointment on December 21 (Winter Solstice). He was so calm and peaceful that day.
Our Christmas was quiet but nice. We were very sad over the holiday. I am really glad it's over. For me, it wasn't so much this actual Christmas holiday, so much as how sad I felt knowing that future holidays will never come to pass. There will be no more Christmases with Theo and so much that I hoped for and looked forward to with his birth will not happen. All the tree decorating, present opening, cookie making, driving around seeing the lights, all the family traditions that we won't be starting with him. Thinking of all those things that we'll never do together made me feel so sad and hurt and empty inside.
We did have a small tree this year and my mom and grandmother brought lots of nice gifts and so did my dad. Theo got lots of cute, cuddly outfits and a new quilt to keep him warm and new books for us to read to him. It was good to have my mom and my grandmother here. We had Christmas dinner and rode around to see the lights on Christmas night. Theo fell asleep on the car ride--he loves to ride in the car. He for sure knows that lots and lots of people love him and that's all the gift he really needs.

Tonight we are planning on staying home with him and bringing in the New Year with him at midnight. He is almost always awake at that hour and we plan on toasting him and giving him the first kisses of 2006. We'll have some champagne and he will have his formula since his last feeding of the day is around midnight. He did get tastes of sugar, honey and chocolate syrup over the holiday--we rubbed a little bit of each on his tongue. He didn't have much reaction to the honey but smacked his little lips over the sugar and the chocolate. I couldn't really tell whether he liked it or not, but at least he got to try some tastes on his little tongue.

I really appreciate all the supportive comments I have gotten from people on email and on the blog about my last post regarding the attitudes and reactions of others to terminal diagnoses and death in general. The support from people who care about us and who have had common experiences, whether with dying parents and loved ones or with struggles with their children with disabilities, is so helpful to me. I am reading several books right now, each a little different, but all having to do with dealing with grief, bereavement and loss, and they all speak of how crucial it is in these situations that the bereaved or grieving persons are not alone, how much the support of others determines how well they deal with the loss or tragedy. Knowing others care about us, empathize and sympathize with us, makes me feel less alone, lessens the pain a little bit. And I know that it will only get worse for us before anything gets better. I know that there will be a time when I won't be able to imagine it ever getting better at all. We're not there yet. I am not looking forward to that time at all, but I am trying my best to be as prepared as I can.

I am slowly I think coming to a place where I am beginning to accept that brain tumors that cause irreparable brain damage and ultimately death--and other tragic things like disasters, sickness, accidents, violence--are not things that God can intervene in--or otherwise He (or She or the Universal Spirit or whatever you call the Divine) would. If I don't believe that, then I can receive no comfort at all spiritually and I don't believe that I could get through this, and all the days that are to come, on my own, without feeling that I can recieve help from some higher power. Harold Kushner the rabbi who wrote Why Bad Things Happen to Good People (and whose son died from a progressive, terminal disease) writes that can believe one of three things about God---that either 1) He is all powerful and sometimes chooses to intervene sometimes not, 2) we deserve what we get and God allows those bad things to happen to us, or 3) there are some things God can't control, things that are subject to laws of nature. Which, in Kushner's view, God created as unchangeable for good reasons--like gravity is a good thing because it holds us all on the planet and keep everything in place, but doesn't get reversed to save a child from falling off the second story balcony. All the things we are taught to believe, if we pray hard enough, if our faith is strong enough, that God can do anything, that nothing is impossible, all those things only set us up for heartbreak and bitterness when they don't come true. Those things cause us--cause me--to bargain with God, to make promises (if only my child will be healed I will do this or that) which is just ridiculous becuase if God was going to do something why would He need to extract some promise from me to do it? To beg God, which is also useless. Those kinds of beliefs cause us--cause me--to only feel abandoned, cast aside, unworthy, alone, angry and then guilty for being angry. Those beliefs cause us --me--to think that maybe it is my fault--maybe I didn't have enough faith. Thinking which then leads to the possibility that the unfaithful are then responsible for teh tragedy out of their lack of faith. I am not responsible for Theo's tumor and brain damage. I would do anything to save my baby and take away all the hurt that he has been through over these past four months. I can hardly believe it's only been four months--it feels like a lifetime. But those kinds of beliefs are useless and dangerous and harmful. And very, very hard to get past. Even when intellectually, I know better. Emotions and desperation have considerably more pull than intellect when your baby's life is at stake and being threatened. And when those kind of beliefs are reinforced by people around us, it only makes it more difficult to resolve feelings of guilt and inner conflict. Do you know that a woman at my job--who I am not at all close to-- actually told me that perhaps it was my doubt that was keeping my baby from being healed? How someone could say such a thing to another person going through the pain of a child's illness and impending death, I can't even imagine doing such a thing. Anyway--I am trying to come to a place of peace, where I can be comforted and strengthened by Spirit. Just my writing all this down tells me that I'm not quite there yet. But the most positive thing I think is that I really believe that my negative feelings are comiong from me, from residual teachings of my childhood that are not serving me well at all now at this most devastating crisis of my life and that behind all these feelings is something else. I think that there is peace and comfort from a Source greater than me and when I am able to resolve my own inner conflict, it will be there for me. Indeed, I am sure that that Source is helpign through all the conflict and searching and confusion that I have been trudging through since August. It's like swimming through mud, trying to get to clear water.

I know that the coming year which is fast upon us will be full of more difficult times and holds a future that I cannot look toward with any hope, except the shred I hold that we can get through it intact physically, mentally, emotionally and spiritually. I know that it will get worse before it gets better, but I know it is possible to get through it--forever changed, but at least intact and still able to live life and find some happiness even if seems impossible at times. I also hope for the continued love and support that all of you have shown us. We wish you all a beautiful New Year of 2006, filled with love and peace.


Monday, December 19, 2005


Theo is home and doing very well. We were discharged on Saturday night and got home around 8:00 p.m. He slept all night and most of Sunday as well. He seems to be doing ok with the pain and we're keeping his morphine on about a four hour schedule. We see Dr. Haynes (the surgeon) on Wednesday for a check up and to make sure that everything is as it should be.

Having the tube removed from his nose has already made a huge difference in his comfort level. His breathing is easy now and without that labored sound it had. He hasn't gagged or coughed at all and I'm sure his throat must feel better. And once the site heals around the tube, I think he will feel even better. Right now we have to be careful not to jostle him too much and be very careful when changing his diapers, holding him or moving him. But as long as he gets his pain medication regularly, I think he will be ok. We will probably start backing off the morphine to every 6 hours tomorrow and eventually we'll go back to giving the methadone three times a day and morphine only when he is very agitated. Prior to the surgery, we were only giving the morphine once or twice a day with the methadone schedule.

I've been thinking about the stress of the whole surgery day, with Dr. Haynes not coming to talk to us, the residents forgetting to put in an order for his medication before surgery to keep him comfortable, and I wonder whether it would have happened if Theo was a child without a terminal illness. I don't know whether it would have been different, but I think it would have. I'm only speculating and fully aware that I am severely biased, but I think it makes a difference. I think overall the medical community has a very hard time dealing with those who are dying. When they are powerless to heal, when all their efforts to eradicate the disease fail, I think the tendency is to move on to those patients whom they can heal. I think it is much easier to be less invested, or to "forget" about a patient's family waiting to hear about the results of a surgery which will not heal their child, but only make him more comfortable--which is not a small thing, it's quite a lot, in fact. I have heard nothing but good things about this doctor, particularly his bedside manner and the way he deals with patients and their families, which is why we chose him to do Theo's surgery on Friday. To forget about us, to fail to update us on how the surgery went, how Theo was doing, where he was being moved and when, seems very out of character compared to all I had heard.
I wonder if this situation is more of a general reflection on the medical community and society's discomfort with death in general and particularly the death of a child. It's not something anyone wants to talk about. When I do talk about it, if I happen to feel comfortable enough to bring it up or if someone asks how he is doing--and it's never a simple answer--and I tell them the prognosis, they immediately get very uncomfortable--even when they already know. Initially they are always concerned and sympathetic but once I say that he is dying or tell them how long we have with him, they look scared and uncomfortable, and steer the conversation to another topic--How Jamie and I are doing, whether we need anything, how work is going, whatever. And then there are those people who insist that I "shouldn't say that", that I should "not lose my faith" and that miracles can happen, that he will be healed and other things. I know some people believe those things, but other people say those things because to talk about the reality of the situation is too stark, too painful, too unfathomable. Even in the hospital, the discomfort on the faces of some of the nurses and doctors is evident when we talk about the prognosis and why we have made certain choices. I know, better than anyone, how terrible it is to think about--it isn't just any child dying, it's my child--but I also need to think about it, to plan for him, to come to terms as best I can before it actually happens. Even though I know that no matter how prepared I try to be or think I am, I may just fall apart--I don't know what it will actually be like when it happens.
I wonder how different all this would be, if death was something that was accepted as part of life in our society, as the sacred passage that it is and what it would be like if we weren't so afraid to talk about it. Dying patients (of any age) and their families should be made to feel just as comfortable and be treated with the same importance and respect as those patients with illnesses can be treated and healed. Don't get me wrong, we have been very blessed to have many wonderful people helping with Theo's care who are comfortable with us and our situation and who are incredibly supportive and understanding--our home health nurse Donna (who is just wonderful and loves Theo so much), Dawn with Noah's Children Hospice care, Dr. Ward, several of our oncologists and the nurse practitioners there, our PICU nurses--any many people in our personal lives who let us talk about it and sit with us through it--but a great many of the health care professionals who have been in and out of Theo's life and many, many people outside the medical field are very uncomfortable around us or would just prefer not to deal with it. And they don't have to, it's just something I think about. Even as I write this I feel the need to aplogize for being morbid, for offending anyone, or making anyone uncomfortable. And I wish I didn't feel that way.

Anyway, I will keep you updated---as always, keep us in your hearts.


Friday, December 16, 2005

12/16/05 11:00 p.m.

I just got home from the hospital. Jamie is staying overnight there with Theo. I stayed up with him last night till about 2:00a.m. and am super tired.

The procedure went really well and he is doing great. He is having some pain from the incision and the tube placement, but as far as I can tell, it only really bothers him when it gets jostled around--like diaper changing or sitting him up if he slides down the pillow. They're giving him his regularly scheduled methadone plus morphine every 4 hours overnight and probably tommorow as well.
They are telling us that he will most likely get to come home tomorrow. When these g-tube placements go well and the child can tolerate feedings well, they get to leave pretty soon. So that's good, it'll just be another thing to feel nervous about learning and doing correctly until we get used to it. It's amazing how used to these things you get--I just have to not really dwell on thinking in detail about what I'm doing--flushing the tube coming out of his chest, pushing meds through a tube in his nose, and now maintaining and caring for the newest tube coming out of his belly--which is placed next to the tube running from his brain into his abdomen...
Anyway--we are really relieved that he is doing so well, especially after the incredible stress of the day. We got there at 7:30 this morning--They called yesterday evening (I can't believe it was just yesterday, it feels like several days have gone by) and told us that he was now scheduled at 9:30 a.m. and was first on the list. So, we were glad not to have to be there at 6:00 and pleased to hear that he was first on the list. We got everything packed up this morning except his medicines because I figured he would be going under anesthesia before he would start to miss his morning dose of methadone and then after that, the hospital would supply all his meds. Well, of course, you know that went wrong. I should've known better. We waited in the lobby area for a couple hours and then went back to the holding area where we waited another couple hours. An emergency procedure had come up that had to be attended to first, which was entirely understandable, I was just concerned about Theo getting hungry and cranky and especially that he had not had his methadone at 9:00. They told us they would order him something to "take the edge off" and forgot about us for another hour. By 11:00 a.m. he was missing his second meal of the day and still hadn't had any drugs. So after having asked twice with no results, I got really upset and nearly turned into Shirley Maclaine in "Terms of Endearment" demanding medication for Debra Winger (if you haven't seen that movie, see it--it's great, plus you'll know what I'm talking about). Finally, they came in and gave him some versed--a medication that puts you in la la land pretty quick and he was fine and then we were fine. I really hate getting like that too--I just don't understand why they can't understand what we might be going through. They took him back for the surgery at almost noon. They told me it would be a couple hours and then he would go to recovery. We weren't allowed to go into the recovery room with him but they would call us as soon as they were getting ready to go up to his room so we could walk up with him. The surgeon was supposed to come out and talk to us after the procedure to tell us how it went. We went down to get something to eat and were gone about 30 minutes. They give you these big round pager things (like you get at Outback steakhouse that blink and vibrate and beep obnoxiously when your table is ready) so they can get in touch with you when it's time for the doctor to talk with you or whenever they need to get you for something. The pager didn't go off and didn't go off and continued to not go off--so finally at 4:00 I went to ask the desk woman to please find out if things were ok. She couldn't figure out who "Theeolonus Figbar--Fegbeck--what is his name?" was, finally located him and said, "Oh, he's been finished, he's up in his room on the 7th floor". I could feel my eyes get all big and crazy, and I almost couldn't form a question, but finally asked how long he had been up there, and the desk woman said, "Just ask the nurses when you get up there how long he's been there". She didn't even know what room. I was incensed. Livid. I mean, who does surgery on a 7 month old child and doesn't come tell his parents how he is or even that he is out of surgery?! And then takes him to another floor, to a room without a number and doesn't tell anybody?!
We went up to the 7th floor and, of course, had to stop first at the security table. They had no record of Thelonius Fueglein in their patient book, they didn't know where he was. I just about lost it and the security guard said, "Just go on back ma'am, and talk the nurses". We found him finally in a room with three other babies. I was so relieved and so totally pissed off at the hospital. He looked really tiny to me in the big crib bed, but he was alert and calm and his color looked very good. He was fine. The nurses told me he had been up there for about a half hour. They finally got the doctor on the phone and he apologized several times saying the whole thing was his fault, that he had been called away to an emergency and he had told his staff not to talk to us becuase he was going to come right down and talk to us as soon as he took care of the emergency situation and then he simply forgot. So, there we were. I was still really upset. Everyone on the floor was super nice to us after I expressed my frustrations and the nurses and the other doctors on the floor seemed very sympathetic. They gave us a private room. The staff have all been extremely attentive all evening. Theo is doing ok and that's the most important thing. So that was our surgery adventure for the day.

Tomorrow we will learn more of how to take care of and use the tube. The one that is in there right now is a temporary one --kind of like starter earrings that you get when you first get your ears pierced. You have to leave the starter ones in for a while until the holes heal up enough so that they won't be sore and won't close up when you put the earrings you like better in the holes. We will get a "button" in a few weeks--the button is like the better earrings that you like instead of the ones you have to have because of the new piercing. Right now there is a long flexible tube with a cone thing on the end hanging out of his belly. Once the site heals, that tube will come out and we will go into the clinic and put in a shorter tube with a little button thing that sits flush with the skin so there is no tube thing hanging. When it's time to eat or give medicine you just pop the little cap off the button and insert a tube with an end piece called a key that then turns to open the button and then just put the food or medicine in. When it's done, you turn the key part back to lock, remove it and put the cap back on the button. That will be in about 3 weeks or so. Changing it won't be a painful thing at all--it will really be like changing an earring. We will also have an emergency kit at home to put in a new one ourselves just in case the tube comes out. They told me that until it heals though, if it comes out, we have about 30 minutes to get a new one in before it starts to close up.

It's a wonder people who are piercing crazy don't get this procedure done just for a new, shocking, avant garde body art thing.

I'm really tired now and am going to bed so I can get up early and get to the hospital with Jamie and the baby.

Keep sending us the positive thoughts and your love---

Wednesday, December 14, 2005


Theo definitely has a cold. I said in the previous post that I thought that's what it was at first and then changed my mind, but following that post, he began sneezing a lot and producing tons of snot. He ran a fever on Saturday of 101.7 and threw up several times. When I called the doctor, he told us that babies frequently throw up when they have colds due to swallowing excess mucus. The fever came down after giving tylenol and he slept most of the day and night all weekend. He still has some problems with coughing and gagging with lots of snot, but he is definitely feeling better. Jamie caught Theo's cold and is wearing a mask around the house and in general feels crappy. I have been taking Zicam and that Airborne stuff to fend it off and I think I have been pretty successful, no signs of any cold.

Jamie met with the guy who is putting together the DVD for us and I think it is going to turn out really well. We spent all weekend going through every one of the video tapes we have made of Theo since his birth and all the photographs, picking out the best ones for the DVD. It was really hard to watch the videos of Theo, especially the clips where he is trying so hard to imitate our facial expressions and to talk. Just before all this happened, he had just begun clearly studying our faces and trying to imitate our facial expressions and sounds. There are couple of clips where he is making his "oh, oh, oh" sounds and they just broke my heart. There is one where I am sticking my tongue out at him, rolling it. You know how some people can roll their tongues up? I remember learning in high school how that's a genetic thing. In the video, I am holding Theo on my knees and he is looking up at me while I roll my tongue at him asking him whether he can do it and you can see him thinking so hard and studying my face, working his little mouth and me sticking my tongue out at him over and over and then-- I don't know if it was coincidence or not, I don't think so--but he sticks out his tongue smiling and it is so cute!

Watching him on video evoked the strangest mixtures of feelings, first feeling the happiness, remembering, almost reliving, the feelings of the moment, laughing and happy, proud of his progress and his effort, and then being struck by this incredible sadness and longing for those times with my baby, regreting that they were so short and fleeting, wishing for it all back. Feeling the shaky, anxious flutterings in my belly, the clenching feeling around my heart, pressure in my chest, tears stinging my eyes. Knowing that I will never see him do these things again, that all that is gone. All this while holding my baby Theo in my arms. I looked down at him and it struck me so poignantly how drastically he and we have changed. It is like having a completely different baby. It's as if the baby in the videos has already gone. We have a different Theo and new relationships with our new Theo. And the heartbreak of knowing that the Theo we have now will only be with us for such a short time and then we will have to say goodbye to him too. He is so sweet and soft and warm, every second we have with him is spent holding and caring for him and loving him. Smelling his head, kissing his sweet face, his feet, his chubby little legs.
We go in on Friday at 6:00 a.m. for the g-tube placement. We are both feeling a little nervous about it. He will probably be in the hospital for 2 or 3 days. We just hope that all will go well and that this will provide some comfort for Theo and for us. But first he has to get through the surgery and then the healing. I will post after surgery on Friday afternoon to let everyone know how he is. After surgery he will be in what they call a "step-down" unit. Our home nurse Donna, who used to work in the MCV PICU, told us that a lot of the PICU nurses also work in the step down unit, so maybe he will have some of his PICU nurses who love him so much. That would be a huge relief to us. We'll just have to wait and see.

Please keep us in your thoughts and prayers.


Friday, December 09, 2005


Theo is doing ok with his new medications. We have had to give him morphine on an as needed basis mabye once or twice a day. The methadone is given three times a day instead of every 2-3 hours like the morphine. He has had some trouble with the choralhydrate. It puts him to sleep pretty quick, but it really upsets his stomach. As soon as we give it to him he starts gagging and spitting up. Some nights he tolerates it better than others, but it always bothers him. And it's no wonder, it smells terrible, like furniture polish. He usually goes to sleep while he gets his last feeding and then wakes up some time after, sometimes earlier, like 2:00 a.m. and other times around 4:00, so whenever he wakes up, he gets the chloralhydrate and then he usually sleeps till 7:00 or so. Jamie says that when he stays downstairs with him, he sleeps less and always has a horrible time with the chloralhydrate, throwing up and gagging terribly. Who knows what makes the difference from night to night?
Over the last couple days, he has been sneezing a lot and gagging and coughing up a lot of mucusy stuff throughout the day. At first I thought maybe he was getting a little cold, but I don't think that's what it is. I think the tube is just really bothering his nose and throat. So, we are still taking turns staying downstairs with him as long as he continues to have these gagging and choking problems. He has his last feeding at midnight and since he's been gagging, we slowed his feeds down so that it takes about 2 hours to finish, he gets his methadone dose at 1:00 a.m. and then the chloral hydrate at some point during the night after he wakes. We stay with him so we can be right there to sit him up when he gags and to clean him up if he spits up and to give his medicines. We are getting a little more sleep than we were before the methadone and chloralhydrate were added, but he still needs one of us to be right there with him. Hopefully, after the g-tube is in place, he won't have the breathing and sneezing problems although I don't know whether it will help with the gagging. That has definitely gotten better since we started the prevacid, but Dr. Haynes told us the tube may not stop the acid reflux and he might still have those problems even after the surgery. We'll just have to wait and see. Since we are able to sleep a little when he is sleeping, particularly after the dose of chloralhydrate, I think it's been easier. We are both still really tired and mentally and emotionally just exhausted all the time, but I don't expect that to change for a long time.

We have been looking up different video/photo services to put together a DVD of photos and video of Theo with music. That is our latest project. I want to have a little montage of still photos and videos of Theo. We want to use Thelonious Monk's famous jazz composition 'Round Midnight which is, of course, Theo's song since he is has the same name (except without the "o" a the end) and having been born at 12:02 a.m., as well as this really pretty lullaby song I love called Night Owl. We haven't picked a third song yet.

I'll continue to keep everyone updated--please keep us in your thoughts and prayers.


Thursday, December 01, 2005


Everything went very smoothly yesterday for the MRI. They were an hour behind and Theo did great. He hadn’t had anything to eat since about 5:00 a.m. and none of his medications but he remained very calm and content until about 11:40 (an hour past the scheduled time for the MRI). I did get a little upset with the radiologist, or rather, I took my frustration out on him, when he came in to get yet another history. Two people had called from the department earlier who wanted to know all his history—the diagnosis, the treatment, the surgeries, and “now, tell me again, why was the chemotherapy discontinued…” . I had asked one of the people who called why, when the whole thing was on record in that very hospital did people continue to require me to tell the whole story over and over. They didn’t have a very good answer and neither did the radiologist when I asked him why I need to give the history 5,000 times. In addition to having talked to those two people on the phone I had not 5 minutes earlier filled out a bunch of papers asking for diagnosis, surgeries, medical problems, reason for the scan, etc and I was very thorough in filling out the form. So when Dr. Whatever-His-Name-Was came in and said, “I just need to get a little history…ummm, what brings you in for the scan?” I just about flipped out. At that point Theo was also getting fed up, was feeling hungry and wanting his morphine I imagine, and he was crying. So that wasn’t pleasant, but I gave him the history anyway, just to get it over with, and of course he was all apologetic, but didn’t have a good reason either for why they can’t just freaking access the history or simply read the paperwork I filled out. Finally, the nurse came in and gave him the chloralhydrate to sedate him. He was totally out in about 2 minutes, went through the MRI beautifully and was able to open his eyes for the nurse to show that he was ok (after a lot of tickling and undressing and rubbing with a cold cloth) and then immediately went back to sleep for about 6 hours.

Today was the big meeting with all the doctors to review the results from yesterday’s MRI.

The tumor shows new growth.

It is back and is currently about one fourth the size it was when it was removed in August.

There is no news that would be good news at this point, but I am relieved that that the tumor is back. It’s a terrible thing to think and to feel, but it is preferable to the alternative. That he would live his whole life, however long it might be, with this severe brain damage, never developing, never growing up, never doing anything more than what he does right now, is unthinkable to me. I would never want a life like that for him. Or for us. So these results today, although heartbreaking and now giving dreaded certainty to our fears--we know now how limited is our time with our sweet boy--at least they confirm that he won’t have to live his life severely impaired, unable to function and with little to no quality of life in the long term. I have so many mixed feelings I can’t even begin to describe all I am feeling, but I can say that relief is high on the list. I am sure that more grief and sorrow and pain and hurt and confusion is waiting in the wings, but I am relieved just to know, to have some concrete knowledge of what to expect and what is happening.

Dr. Ward can’t say how fast the tumor is really growing because they grow exponentially. The new growth started with one cell, that cell divided into two and those two divided into four and four turns into eight and so on. So, the bigger it gets the faster it grows. I asked specifically for a time and he said that he really doesn’t know for sure but if he had to guess he would say three to sixth months. It could be a little longer, probably not less than that.

We wanted to know what to expect when the time comes, what behavior to look for, what symptoms we would see. Dr. Ward said that Theo would get more sleepy, less active, harder to rouse. He might just go to sleep and not wake up, or he may have some difficulty with his breathing toward the end. If you’ve ever been with someone at the time of their death, or very near death, you may have heard that kind of breathing; labored, rattling, long pauses between breaths. He may do that, but he may not. I just hope it will be very quiet and peaceful for him and for us. It’s strange to think how undramatic the whole thing could be and yet when it happens, I just know my whole world will crumble. No matter how prepared I think I am or might be, I know that I won’t really be ready or truly prepared when it actually happens. Nobody ever is.

The ventricles look really good, much smaller than the last MRI done in mid-September before our discharge. This shows that the shunt is working well and keeping the pressure down in his brain. This ensures that he won’t have any headaches, nausea or other symptoms caused by pressure in the brain as the tumor grows.

They also asked about his current behavior and how he’s been. We told them about his sleeping difficulties, his problems with the acid reflux, the breathing problems with the ng tube and about our visit to Dr. Hanes.

Dr. Ward said he thinks the surgery for the g-tube would be a good idea and would ultimately make Theo more comfortable. And if he thinks so, then I feel okay with it. They were all also very concerned for us, staying up with Theo all night, never getting enough sleep. So they spent a lot of time talking about his medicines. They put him on methadone to replace his regularly scheduled morphine. We will keep the morphine and the ativan to give on an as needed basis, if he gets really agiated, but the methadone will be his regularly scheduled pain medication. It’s stronger and won’t need to be administered as often. Although they did say that they don’t think he is in any real pain, that his agitation is most likely neurologically driven—a result of his brain damage. But regardless, the medications calm him and he is definitely more content when they are given. So we don’t care if he is merely being sedated, it is better than watching him cry and scream and arch his back and be overall miserable. The doctors seem to agree. And if there is the slightest chance that he might feel any pain, I want to take it away completely.

When we were discussing Theo’s not sleeping at night I said, half kidding, “Why don’t you give us some of that chloralhydrate, that knocked him right out” and they just said, “Ok, we can do that”. So we now have the chloralhydrate to give at bedtime so he will (hopefully) sleep through the night. It’s a very commonly used medicine for sedation. He got it for the MRI yesterday and had gotten it previously for MRIs while we were in the hospital and my dad said that it’s frequently used in pediatric dentistry, but I didn’t think they just gave it to people to use at home. I guess Baby Theo might be a special case.

Chloralhydrate is very fast acting. It's used in tranquilizer guns to sedate wild animals and is also the drug that people are talking about when they say somebody “slipped him a mickey”. Evidently, back in the day when sailors used to come in for shore leave and pick up “girls”, the “girls” would “slip him a mickey” and then rob the sailor while he was out. So starting tonight, we are slipping Theo a mickey at (our) bedtime and hopefully he will sleep through the night and so will we. Although, for the next 24 hours he has to get his scheduled morphine every 2-3 hours along with the methadone so he won’t have withdrawal symptoms. After we get him on a regular methadone schedule, he won’t have to have morphine every 2-3 hours and we will all be able to sleep through the night—knock on wood and keep your fingers crossed.

That’s about all I have to report for now. His surgery for the g-tube is on for December 16th early morning. That is the next big thing. I will keep up posts in between to let everyone know how he is doing with his new medicines and how we are doing with sleep and everything else.

Please do keep us in your prayers and in your thoughts.

Sending love,

Wednesday, November 23, 2005

November 23, 2005

I just wanted to let everyone know that our surgery date for the placement of the g-tube has been rescheduled to December 16. The surgeon forgot that he will be out of town on the 9th. Of course, he may not be getting the surgery at all depending on the results of the MRI on the 30th. That is next Wednesday. We will know the results on Thursday. I have so many mixed feelings about it. I want to know what is going on in his head--what is happening with the tumor-- so we can have an idea of how long this will continue, make plans for the future---just know what is going on. But the thought of it makes me very anxious and scared too. All kinds of scenarios can play out in my imagination. So I try not to think about any specifics.

Theo is doing much better with his gagging and throwing up since we started him on the prevacid. We are crushing up the little balls that clog up the tube and dissolving it all in water before giving it to him. There is another form of the medicine --a solutab--which we got after we had so much trouble with the other stuff, which was the wrong kind for the pharmacy to have given us in the first place. The solutab is made to dissolve quickly on the tongue and says on the package specifically that it can be used with ng tubes of the size Theo has. The little balls in the solutab are much smaller than the others, but still cake up together and clog the end of the tube--we tried it once and it got clogged but luckily we were able to pull back on the syringe and unclog it. So we took an empty tube and practiced with it over the sink and saw how the little balls clump up together at the end of the tube. Even though they are individually small enough to fit through the opening, once they get clumped up, they stop the flow through the tube. We let the pharmacy know, but I think we will write the drug company. I wouldn't want anyone else to have the same problem of having to remove the tube and reinsert it over and over becuase the medication clogs the tube. So, since then we have been crushing the medicine, which I think probably reduces it's effectiveness-- the instructions are pretty clear about getting the balls in the stomach intact--I think it still has had some positive effect and I really think it has helped him. He seems more content and has not been gagging or throwing up. He has coughed some, but I think that's mostly due to excess saliva in the back of his throat. There has definitely been an improvement and that's been a relief.

Over this past weekend, my good friend Pam came from Indianapolis to visit and she stayed up with Theo over nights so we could get some sleep. It was so nice to be able to go to sleep together in the same bed and sleep all night long! We had a really nice visit. I still feel so tired though. We both feel like we could sleep for a week straight. We're back to our regular schedule now of staying up with him every other night. Lately, Theo has not been sleeping much at night. He has been calm, but awake. And if he is not asleep, we can't sleep. I don't know what it is, he just isn't sleepy at night. He continues to be more fussy at night, but for the past couple nights he has been more calm, but not sleepy. Maybe his brain just works that way now. I don't know. I think he isn't as fussy because the acid reflux is better, but I don't know why he hasn't been sleepy.

My mom is coming tomorrow and bringing a turkey and broccoli casserole. I'm making stuffing and sweet potato casserole with pecan topping. We are just having a very low key dinner. Not a big deal. I feel ok about Thanksgiving, it doesn't bother me to think of having a Thankgiving dinner, but the thought of Christmas coming makes me feel anxious and sad. We have decided not to celebrate this year. Some people have asked me if I will regret not celebrating since it is his first Christmas, but the thought of it being not just his first, but his only Christmas makes it feel really awful for me. He doesn't know it's Christmas anyway. If he was aware of it, things might be different, but he has no awareness of something like that, he wouldn't even be able to see the lights on a tree. So, as long as he is content and peaceful, I will be ok.

I wish everyone a good Thanksgivng tomorrow. Even with the pain and sorrow we feel daily, I am thankful that we have each other and people who love us. We have a warm home, good food to eat and we are both healthy. I am thankful that I have some time with my precious baby and I that I am his mother.

Blessings to all of you--

Friday, November 18, 2005


We had our surgery consult on Wednesday the 16th. Theo was great the whole time--from the minute we put him in the car seat and went to the hospital until we got home, he was very calm and content. He even went to sleep in the examining room. We met Dr. Hanes who seemed very nice. He says the the gagging and choking is due to acid reflux which is common for babies in general, but highly common in babies with problems like Theo's--it's most likely a nuerological issue. He also told us that having a g-tube placed in Theo's belly may not fix that, and could possibly make it worse. He also feels that the procedure is not a simple one and carries many risks which bear serious consideration. I was glad to hear that my worries about the seriousness of this surgery were not unfounded--I have heard so many people tell me how "simple" the procedure is. Dr. Hanes also believes the best course of action is to wait until the results of the November 30th MRI to see what is happening in our special baby's little head. If the tumor is growing quickly and the prognosis is a few months, he doesn't feel the surgery is worth the risk. General anesthesia carries many risks and the surgery itself, Dr. Hanes said, is very painful afterward and can take a while to heal. There are also the risks of infection, and all the other risks surgical procedures carry. He said that if the tumor is very slow growing then he will go ahead with the placement of the g-tube in the belly. If by some remote chance there is no evidence of tumor, he will place the g-tube and do another surgery called the nissen fundoplication (sometimes called "the wrap" or "fundo") where the upper part of the stomach is wrapped around the lower part of the esophagus. This would add to the risk considerably but treat the reflux. And I hope that this will not be the option. The only way that he would do that procedure is if there is no tumor. I have said before that my biggest fear right now is that the tumor will not come back and Theo will be left to live his life this way. Dr. Hanes referred to his brain damage as the "neurological devastation", which it is. Nobody had said that before. Everyone else (medical people) either avoids prolonged talking about the brain damage or will say, "the injury" or "the insult". So anyway, he scheduled him for the surgery for December 9, just in case, but whether he actually has the surgery is subject to the results of the MRI.

In the meantime, I still don't know what can be done to help Theo with his breathing issues--and neither does anyone else--I asked that specific question twice and never got an answer. I know his breathing issues are completely caused by the irritation of the tube in his nasal passages and in his throat. This morning I had to remove the tube because it got clogged with these little time-released pellets of prevacid which we were prescribed to help relieve the reflux (we later got the right kind straight with the pharmacy). When I took the tube out, we realized that was our last tube so Jamie had to go to the place that supplies all Theo's feeding stuff to get more tubes--they couldn't deliver till later in the day and he needed food and medicine right away. So the tube was out for about an hour and he had no breathing problem whatsoever during that time. Once he calmed down from being upset about me pulling the thing out of his nose, he slept more peacefully and soundlessly than he has in three months. He was so upset when we had to put it back in and his little nose bled and he was sneezing blood-not a lot, but it upset me so much that I couldn't do it and we had to call our nurse and she came over to do it. She said the bleeding was very minimal and caused by the irritation of his nasal passages. That's the reason that he wasn't going to be able to keep the ng tube if he had stayed on chemo. The risk of infection is high because the nasal passages always get irritated from those things and chemo lowers the white blood cell count so much. So, I don't know what we can do to help him. I just wish he could eat and swallow like normal--but that's pointless to wish for. It just breaks my heart to see him suffer for one second.

So--once again, everything depends on what the MRI will show on the 30th. 12 more days until we know what is happening in Theo's head. We won't know the results until we meet with the doctors on the next day December 1.

Keep us in your prayers--
Love --

Friday, November 11, 2005


Hi everyone--
Again, sorry it's been so long since the last post, things just get so hectic, and not a lot really changes with Theo. He has been breathing a little easier, although he is still having those problems. The only time he doesn't have the breathing issue is when he is sleeping. That's how I know he has awakened--when I hear the wheezing, I know he is awake. Even when he is awake and calm, he has noisy breathing. It definitely gets worse when he is agitated, but he does do it a little bit all the time. When I took his tube out to change it last weekend, the brething problems abated for the time I had the tube out. So I am pretty sure the tube is making this worse if not directly causing it. I think the tube might be causing him to constrict his throat muscles or something. When he is asleep he is completely relaxed and so the airway is totally clear. He also continues to gag occasionally with his feeding or when we give his medicines. He hadn't done it for several days but then gagged several times on Thursday and spit up twice.

After thinking about all this and really weighing all sides and talking with our home nurse and our nurse practioner at MCV, I called and set up a surgical consult with pediatric surgery to schedule the gi tube placement in his stomach. Our consult is for next Wednesday the 16th at 1:40 p.m. Dr. Hanes with MCV pediatric surgery will be seeing us and doing the surgery. Our home nurse Donna recommends him very highly. I haven't met him yet, another surgeon did the Hickman surgery when we were in the hospital.

I'm not looking forward to Theo's having to go through another surgery, but I want him to be as comfortable as possible and in the long run, I think it will help him breathe better and to have his feedings without gagging or throwing up. I think the tube in his nose, which goes down his throat is just irritating him. I don't really understand the throwing up and gagging, because he only does it occasionally and the majority of the time, only when we give certain medicines--the docusate and the phenobarbitol--but once he does it once, he gets agitated and then tends to have problems coughing and gaggin for several hours with feeding. We have had to slow his feeds way down or try to wait until he is asleep to feed him when this happens. I just hope the surgery for the placement of the gi tube in his belly goes well. People keep saying how simple a procedure it is--and I'm sure it is, but it's still surgery and he will have to be under anesthesia and have pain afterward and heal and there are certainly risks. I do feel though that it will better for him eventually. I'm pretty sure the surgery won't take place until after his MRI on the 30th. The nurses said that Dr. Hanes would work around that.

Other than that, not much else is happening. Theo weighs 18 lbs 2 oz now and looks healthy. Jamie and I are continuing to take turns staying downstairs with him and he sometimes has good nights, but often is very fussy and uncomfortable, crying and arching his back, tensing up his muscles. He has increased his agitation again in the evening and we have had to give him his morphine and ativan more frequently. We can't stand to see him upset and crying, especially when there is nothing we can do to help him or even know what is wrong. I think it's mostly jsut a weird cycle that he gets in. He tends to do very well in the mornigns with few problems, he hardly ever cries or gets upset in the morning, even when we change him or dress him or give him a bath. As the day goes on his crying and agitation increase. Night time is the worst. When we stay with Theo downstairs we get 2-3 hours of sleep, and that is scattered over the whole night, so we are basically sleeping every other night. We try to take naps during the day when we are home with him as well. We are just kind of used to being really tired all the time. Afternoons is when it really gets to me. I feel totally exhausted around 4:00 p.m. every day. There are a lot of ups and downs, mood swings, and of course the inevitable tears which seem to just spring up out nowhere. Sometimes I can talk about him and what has been going on or see a baby commercial or whatever and be fine and then other times, I'll just immediately feel the tears come to my eyes. There is also the love I feel for Theo that still makes me very happy and grateful to be his mother. But always, always there is this sadness and heaviness in my heart that never goes away. I know a lot of you have been really concerned about me and the crisis I am facing on a spiritual level. I appreciate your prayers and the messages some of you have sent me by email or comments or in cards. Knowing you care and knowing you are thinking of me, of all of us, is a great help. I don't think anything I have been feeling is unusual. I'm sure it's all normal--that doesn't make any of it any easier. I have felt less angry over the past couple weeks. But I am so acutely aware of the tragedy in our world. On great and small scales. I know that what we are going through is only one small drop in the huge ocean of pain and grief and sadness, need, sickness, hunger, injury, fear, death, lonlieness, abuse, and on and on. Knowing that our pain is only one miniscule addition to the whole does not lessen our terrible pain in the least, but it underscores, I think, the great magnitude of suffering that happens all over our world all the time. And I never really felt the impact of that suffering, of others' pain, of the human situation until now. I knew it was there and I even thought I was enlightened about all the suffering of others, quoting the Bhudda and such, feeling secure in my spiritual beliefs and I had no real idea of what true suffering could be, or what it really meant. I don't think I will ever understand why, not just in our case, but for all of it, and I am certainly nowhere near being through the pain, and there is lots more to come, but I do feel less anger. I don't know what that means either, I guess it's just another phase, more feelings to feel, to go through. I know that I will never be the same as I was before this happened, I am changed and I think that change is something that is ongoing.

Thanks everybody for the cards and well wishes that continue to come in. It really does help me to know that people are thinking of us and loving us and holding us in your hearts.

I'll keep you posted--

Wednesday, November 02, 2005


Sorry it's been a while. Time just gets away from me sometimes. I don't have time to post while I am at work and when I am home with Theo, I don't want to leave him to spend time at the computer.

Not much is going on right now. We did get a futon over the weekend which is so nice. Jamie has a friend who is living in England and her boyfriend is here. They are in the process of getting rid of things so that he can move there with her and after reading the post where I mentioned it, she offered us their futon. We picked it up on Saturday and I got a new mattress and cover. This was great because I could afford to get a much nicer mattress than if we had purchased the whole thing new. Thanks so much to Gemma and Corey for giving us the futon. It has really made staying downstairs with Theo at night so much more comfortable.

Theo has continued to have some difficulty with his feedings and at times when we give his medications--although only with the phenobarbitol and the docusate. He gags and sometimes throws up during feeding or right after his meds are given. He also gags a lot when he is the least bit agitated so we have to slow his feedings down quite a bit and turn the feeder off when he either throws up or seems like he is feeling uncomfortable. So there have been days when he is beign fed for very long periods and times when he hasn't gotten all his food because he can't tolerate it. Or we wait for him to be asleep to feed him. It never happens when he is asleep because he is so relaxed.
He has gotten better with the strange breathing pattern, which I think I mentioned earlier, but still does it occasionally. Our nurse called the doctors last Thursday when she was here--we made a tape of it at it's worst and played it for her. It sounds like he is struggling for breath or like he is having an asthma attack, but there is nothing wrong wih his lungs. Like the gagging thing, it only happens when he is upset and never when he is sleeping. It seems like an airway obstruction that happens when he is agitated--or maybe he gets agitated because of the breathing problem. He has done it less this past week and has seemed a little more calm overall. The doctors said that if he starts doing it more frequently, including in his sleep, to bring him in, but until then, to continue to monitor.

Not much else to report, I have been up and down, as usual. Halloween was really hard. I didn't think it was a big deal, I got all the way through the day at work with all the kids I work with dressed up and having a Halloween party, and had no problem. On the way home though, driving down the street, I saw all the little kids in their costumes holding their parents hands and their treat bags, tromping up steps and dancing down sidewalks and just started to cry. I actually bought Theo a costume in August before this ever happened--a little black sweatsuit with a skeleton printed on the suit, but I left it in the closet. I didn't want to get him dressed up, I just couldn't bear it, plus he hates to have anything pulled over his head.
I heard on the radio the other day part of a reading of a work by C.S. Lewis, A Grief Observed, written after the death of his wife, and in it he says, "nobody told me grief felt so much like fear" and it does. The same sinking feeling in your stomach, the butterflies, the uneasy, queasy feeling in your gut, uncertainty. It is the very same physical feeling. Especially the feeling in your belly, that turning, anxious feeling. Except with fear, there is a something to be afraid of, a thing your fear is directed toward and you know you are afraid, and eventually the fear is resolved. That feeling in the pit of your stomach that comes with sudden fear generally goes away and you feel relief rush over you that the threat is gone. Grief is that same feeling, but it doesn't go away, there is nothing that can take it away or bring relief. When I heard the reading of that excerpt, I thought, "He is exactly right. It does feel like that".

Anyway--I will try not to go so long in between posts. I know so many of you are still praying for us and sending good thoughts and I continue to be grateful.

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.

Wednesday, September 28, 2005


We went to see Dr. Ward today to have the sutures removed from Theo's shunt surgery. He didn't like that part too much but he did love the car ride and being in the stroller. He loves to go for rides. He is doing pretty well today. We are just taking things one day at a time. There isn't a whole lot to report. We are going in for another MRI on November 30th, a Wednesday. On Thursday, December 1st, we will meet with all the doctors to review the MRI and see what is going on with Theo's very special little head. We are concentrating now on keeping him as comfortable as possible, as content as possible. It's going pretty well, he is much more comfortable here than in the hospital. He sleeps on and off throughout the day but is awake and alert for several hours at a time. He usually sleeps most of the night. His last feeding is at midnight and ends at 1:00 a.m. so I usually stay awake until then and give him his morphine dose at 1:00 when his food is finished. Jamie usually gets up at 4:00 a.m. to give him his next dose. Sometimes Theo wakes up around that time and needs a diaper change, when this happens, it can take a while to get him back to sleep--he doesn't much like his diaper changed or to be disturbed. But he will usually fall back to sleep and sleep till about 8:00 a.m. Then he is fed again and given several of his medications. He naps on and off throughout the day. When he is sleeping he looks so peaceful.

We have decided not to publish Theo's custodial account number but to give our mailing address. If anyone wishes to send anything to contribute to his account, please send it directly to our home. Any checks should be made out to him. His full name is Thelonius Luther Helbert Fueglein, you can use the whole thing or just Thelonius Fueglein. If you send any checks addressed to either of us, we will still make sure it gets to his account, but it would save a step to send things addressed directly to him.
Our mailing address is:
527 North Sheppard Street
Richmond, VA 23221

We continue to be amazed at and grateful for the generosity of our friends and family. So many people have dropped off food and gift certificates for groceries and a couple of massages, our whole street got together and got us meals for a week from a local chef. I almost cried. We are so loved and supported and it means so much.

I am trying to continue to post regularly, about every other day. Things are a bit more hectic now, but they are settling down some.

Please continue to offer up prayers for Theo and for us.

All our love--

Saturday, September 24, 2005


Things are going ok with us at home.
We are both still getting used to having him here and are both dealing with all sorts of emotional ups and downs. It'll be that way for a while I imagine. Today is an ok day--not a good day--but an ok day for me. Theo is about the same all the time, now that we are getting his medications straight. He is on a good dose of morphine so that he is comfortable but not knocked out, we are learning how he is most comfortable, how he likes to be held, positioned, etc. He has times where he seems to feels pain or when he is agitated, for which he gets ativan as he needs it, but we are learning how to best calm him down and help him be soothed. He is mostly peaceful and content. We can tell he knows he is in a safe place, he senses who we are, he responds to our voices and touch, he knows he is loved. He loves to be held and cuddled, he likes to dance to music that he likes (especially Thelonious Monk, Miles Davis, Duke Ellington, a new cd of children's songs given to us by a friend of Jamie's), he responds to our love and care. All of these are good things. Jamie and I are getting used to the new Theo and the whole idea of how things are and how things will be as well as still dealing with the trauma of the last several weeks and the fear of the known and of the unknown. It'll take a while. In dealing with right now though, we luckily have strengths in very complimentary areas. He is better at knowing how to load and run all the pumps and machines, change the medication cassettes for the iv, measure out doses and keep the med schedule straight, note everything down, while all that makes me a little crazy, nervous and frustrated. And I am a little better at being comfortable holding, changing, bathing, comforting our new Theo, being ok while I am with him. Both of us are getting better at everything and are helping and supporting each other where we need help. I am so grateful to have him. He is a wonderful Daddy and my best friend. Most of the time you hear only about me through these posts; my thoughts and feelings. I don't say enough how wonderful Theo's father is. Theo is lucky to have such a loving, strong, reliable, giving, sweet man for his Daddy and so am I.

We are doing ok. I usually feel at a loss for what to tell people when they want to know what we need, because I don't really know what we need. I know a lot of people feel uncomfortable, don't know what to say to us, don't know what to do and want me to tell them what to do or what I need. Sometimes people seem to have problems knowing how to interact with us now. It's hard to find a balance between being empathetic and sympathetic and overbearing or maudlin or maybe it's the other extreme, feeling worried you might seem dismissive or uncaring if you don't talk enough about our plight. It's ok to not know what to say. Just know that we are grateful for all the support we have gotten and continue to get. Don't feel afraid to talk to us about it, but sometimes it's nice to talk about other things. You don't have to always ask how we are, because we don't really know if you really want to know or if the question is only being asked because it's socially appropriate. Ask how Theo is or just let us know you're thinking of us. Don't worry that we don't want to hear about your life or your worries, we do. Everything going on with the people we love is still important to us. Just please know that your love and support mean so much. And we thank you for it. This is a very pervasive thing for us, but the rest of the world doesn't stop because of our pain, even though it sometimes feels that it has. It's strange trying to live day to day and do normal things, have normal converstations. No matter what anyone says or does, or what I'm talking about or doing at any given moment, Theo is in my mind, my heart. My sadness right now pervades all my day to day activities, even when I smile or laugh, sadness is waiting. I know there is nothing that anyone can do to take it away. Sometimes I feel as though I will never be truly happy again. I feel different from everybody else, feel that I am irrevocably changed from who I was just a short time ago. I feel that surely everyone can tell, even the people at the bank or the grocery check out, that something is different about me. That I don't fit in with everyone else suddenly, that I am "other". Like grief and sadness are almost physical things that somehow everyone can see. I don't think that's really true, but it feels that way sometimes.

Jamie has opened the custodial account for Theo at Wachovia. If you want more information about it you can email me. We have had wonderful donations from the people we work with and from family members and friends and all that will go into Theo's account. Anthing sent to us will be put into Theo's account for his expenses and to help cover any expenses we may have if I or Jamie need to take any leave without pay.

We all send our love--
Karla, Jamie and Theo

Friday, September 23, 2005

No Place Like Home 9/22/2005

We're home now with Theo. This week has been very difficult. Having him home is infinitely better than the hospital, but being home with him now has come with it's own kind of sadness and anxiety. Home health people and nurses have been in and out and it's been good to have help, but it's just so different than it used to be. It feels strange having people in and out, having this equipment around, having all these new things in place; medicine schedule, feeding schedule, the maintenance of the iv antibiotic pump, operating the feeding pump, medicine bottles crowding the kitchen counter; and seeing my baby lying there, barely moving, hooked to tubes in our own home, all of this constantly reminds me of how painfully different our lives are now. And the pain that comes from thinking of all the things that will never be feels sometimes too much to bear--no more holding him close to feed (although I am still pumping as much breastmilk as I can), no more smiles and playful times, no watching him grow up, sit up, roll over, crawl around, walk. No trips to see the ocean for the first time, no King's Dominion, no swingset, no explaining why the sky is blue or cleaning up thrown food or messes from playing. I don't want to dwell on the sadness or feel sorry for myself, but sometimes I find it very difficult to remain in the present and not be pulled to the past or to a future that will never exist. I do love being able to hold him and take care of him myself. It is so nice not being at the hospital anymore. But I recognize that we are already in the grieving process, grieving a life we won't have with Theo, greiving the happiness we had before the tumor made itself known.

Theo is doing well. He seems more comfortable since our home health nurse Sherri noticed yesterday that he seemed in more pain when we move him around and she recommended we call and have his morphine adjusted, so now he gets doses three hours apart and seems more comfortable. We had been saying this for a while. It's nice to have our observatios validated by someone else.

He looks beautiful when he sleeps. If he didn't have the ng tube, he would look just like his old self. Sleeping with arms thrown out to the sides looking peaceful and content. We are doing our best to cope and stay as positive as we can, enjoying as much as we can the time we have with him. It's very hard to go to work, to leave Theo and Jamie--and I know Jamie feels the same way when he has to leave us to go to campus to teach.

Sorry I am not more upbeat today. I feel just so incredibly sad.
Thank you all for your continued love, support and prayers. People have asked what we need--it's so hard right now to even recognize what we need, much less ask for it. I know it has been helpful when people have helped clean the house, dropped off dinners or particilarly things we can keep in the freezer and unthaw for quick meals, gift certificates for foods. We could both use a massage. Neither of us ever wants to leave or would do that on our own, but if we had gift certificates we would use them. Little things people have done for us, such as dropping things by like foods or bottles of wine. It is very hard to think of things that we need or want. Money has been very helpful. We are in the process of opening a custodial account for him through Wachovia (where we both have accounts) so we will have that money set aside for bills, expenses the insurance won't pay (they pay about 80%), or future expenses. We will put all the money already so generously donated by our co-workers and friends and family into that account. Any other money we get for Theo will go into the account as well.

We have so much to get used to and to keep track of right now in taking care of Theo's needs that it's hard to focus on our own. Thank you all for everything you've done to help us. Please continue to think of us and send us prayers and good wishes.
I will check in soon.

Tuesday, September 20, 2005

9/20/05 'Round Midnight 12:16 a.m.

Theo is sleeping inhis own crib for the very first time. He has slept in the bassinet next to our bed until tonight. We got home around 3:00 p.m. Nobody was here to meet us. Jamie went to pick up all Theo's prescriptions and I stayed with him. I was very anxious, nervous and worried. I called all the companies involved and in about 30 minutes started getting phone calls from the people driving to the house. First the food supply company Praxair showed up with his feeding pump, bags, and formula. She showed us how to load the formula into the bags, thread the tubing, and run the machine. They sent the wrong formula and the wrong sized syringes to flush his tubing. They hadn't gotten the message that he needs formula concentrate and not ready to use. He has to have the concentrate because right now he is getting a mixture with less water to ensure higher calorie feedings with less volume (he was spitting up due to too much food in his belly). We got it all straight and luckily we had samples of the formula from the hospital and we can also use the powdered forumula we have already if we need to. It wasn't that hard to learn to set up and run the pump, it was just the unreality of the whole experience. It was really hard for me to concentrate on everything she was saying. After she showed up, the man from Bon Secours came with our antibiotic pump and all the accompanying supplies for that. He didn't stay long, but did have several paperwork pieces for me to sign as did the lady from Praxair. Then our very nice and helpful social worker, Dawn, from Noah's Children (not Noah's Ark as I said before) came and really did help me to feel a little better about the whole situation. The others left and we were trying to figure out his medicines. We gave his 5:00 p.m. meds and then our home health nurse Sherri showed up. She stayed for over two hours going over his medicines with us, teaching us about running the IV antibiotic pump and again filling out loads of paperwork. I thought I was going to scream before it was all over. It was so much information in such a short period of time and under such stressful conditions.

Today was really hard for me. I am really glad to have him home, but there is also a new kind of sadness as well. All I can think of are the times we had at home before all this happened. It's all so very different now. It's all so surreal. I feel so sad and heavy hearted. We are doing our best. I think it going to take us time to adjust to this new way of being a family. Tomorrow Jamie teaches his classes and I am staying home with Theo. The next day I go bnack to work and Jamie will stay with Theo. I hope we will all have good days together.

I'll keep you posted on how it's going. I will most likely not post every day, I'll shoot for every two days or so. Check in regularly and scroll down to be sure you don't miss any messages.

Please keep praying for us and keep us in your thoughts.


Sunday, September 18, 2005

Last Day 9/18/05

Today is our last day here--we are counting down the hours. So far the doctors are continuing to say that everything looks good for going home tomorrow. They say around noon, so that really means about 4:00 p.m. And things tend to change quickly around here. I'm just hoping that nothing will prevent our leaving tomorrow. We are very excited about having him home with us.

Theo is doing well (except he really needs to poo--he is a little constipated--he's getting stuff to help him go). He is asleep right now and looking very peaceful. He looks like he is dreaming, little eyes nmoving around, mouth moving. I wonder what he is dreaming of; I hope beautiful things. Maybe he is dreaming of being home.

We have been learning how to do everything we will need to do at home. I took out his ng tube yesterday and put a new one in. It wasn't as difficult as I thought it would be. The tube needs to be changed once a month. We have both practiced changing his dressing on his Hickman which gets done once a week. We have both also given him all his medicines through his tube yesterday and today. So with the home health support, we should be ok. They will meet us tomorrow when we get home to help us hook up his IV drip for the antibiotics, teach us how to use the pump for the antibiotics and the feeding pump. We haven't learned those things in the hospital because they aren't certain we will be using the same equipment they have here, so we are just waiting to learn on the ones we'll be using. We will have very good support from the Noah's Ark people, nurses, volunteers, social workers, etc. I think they are there as much or as little as we need. They will deliver all his medicines and supplies to us and make sure we have what we need for his care. They also have therapists, support groups and clergy people for mental health and spiritual support as well.

We are both really happy that Theo will be home with us. I know he will be more comfortable and so will we. After his course of antibiotics is done--in about a week or so, he won't be hooked up to anything except for when he is feeding so we will be able to walk around with him, hold him whenever we want, go for walks in the stroller, rides in the car, go out anywhere we want with him. It will feel so much better and more normal. We are also glad that people will be able to visit us at home instead of here. I am so thankful for all the wonderful support we have gotten and continue to get from all our friends and family.

I will continue to post about Theo's adventures and how we are all doing.

We love you all--

P.S ---Happy birthday Mommie! I love you.
It's my mom's birthday today :-)