February 29, 2008 - Good News on the Brianna front

Okay, so we got some good news yesterday! Brianna isn't going to need a new fundoplication! At least, not yet. They're going to put her back on reflux meds, in addition to the reglan, and see if that helps with the vomitting. So, back on Prilosec we go. I'm really hoping this will help. I don't want my baby to have to go through surgery again. She was just so miserable before, I don't think I could stand to see her like that again. I don't think I could handle the stress, the crying, the pain she was always in. I know it sounds selfish, but it's not. Because it's a given that, if she were to have surgery again, she would be in pain. It's also a given that any parent worth his or her salt would want to spare their child that pain. Heck, if she could have the surgery and have me feel everything, rather than her, then I'd do that. I'd rather take the pain myself. But that isn't possible. So I'm just glad we're not going to have to do surgery right now.

Yesterday, after the feeding clinic, we had therapy at Shriner's. Brianna got to play in her walkabout first, since someone else was using the wheelchair. She was taking some wonderful steps. She still has difficulty stepping with her right leg, and it frustrates her so much! She gets so angry when that right leg won't do what she wants it to. She starts arching and fussing and gritting her teeth, and generally making terrible faces, trying so hard. Sometimes she gets it, sometimes she doesn't. But she steps with her left leg just fine.

After the walkabout, Brianna got to play in the wheelchair, and I have to say, I have never seen such smooth, deliberate driving from her. I don't know if it was because she watched the other little girl in it, or if it is because she was tired, so she was more mellow, but she followed me up and down the halls several times, making awesome turns and keeping straight on the straight parts. Usually she is wanting to touch the walls and the pictures, or anything else she sees. She is so alert, when she hears someone coming, she wants to see who it is. If she hears the elevator coming, she wants to go on the elevator. But yesterday, she only tried going on the elevators once, and she only tried touching the walls a few times. She did still drive to wear people were, but she wasn't mowing people down in the halls, she just went into the rooms they were in. Which was also a big deal for us. She is doing so amazingly well with her driving, I am so proud of her! By this time next year, she'll be driving like a pro!

February 28, 2008 - Catch 22

Okay, it's about time for me to update, eh?

So, tomorrow, or rather, today, Brianna has an appointment with the feeding clinic. Hopefully we'll find out whether she is going to have a fundoplication done again, and if so, when. I really hate having things up in the air like this. Something needs to be done. She's throwing up once or twice a day, and it has to be miserable. It's going to cause more serious problems down the line if we don't get it taken care of. So we'll see.

In other news, Brianna is making some amazing progress in verbal sounds. She is starting to link consonant sounds together, and the other day, it sounded like she was trying to say "kick you"! I'm so proud of her. She's just so vibrant and happy, and I can only imagine, if she didn't have these disabilities holding her back, she'd be running around, making messes, and talking up a storm the whole time. And I'm sure she'd be spoiled rotten. Thinking about how different she would be, were it not for the disabilities she lives with, hurts sometimes. To think of the things she might miss out on, the things she might never be able to do, is difficult. She tries so hard! She works so hard in her wheelchair, or her walkabout, or whatever else we have her in! And she gets so frustrated when things don't go her way! Watching her in the walkabout, looking at pictures of her in it, it is so evident how little strength she has in her neck and trunk. With so little ability to support herself, will she ever be able to walk without that blasted walkabout?

We found out today that a three bedroom apartment is coming open in this complex, and our name is next on the list, so we get to move into it April 1st, maybe sooner. I am so excited! It's significantly bigger, with, of course, an extra bedroom, a half bathroom downstairs (now I won't have to run up and down the stairs any time I have to pee!), and several more square feet in the living room. Maybe we can get a second couch, or a recliner. Or better yet, we can actually set up the dining room table! Yay!

I also talked to a very nice girl today on the phone, and she is interested in watching Brianna for me, so I can possibly go back to work. They are severely short handed at Sunnyside, having two cooks and one dietary aide no longer working there. So I'm confident that I can get my old job back. Or rather, a position as cook, making a few dollars an hour more. Which would be nice. But I have to be cautious, so I don't lose Brianna's SSI. If I lose her SSI, we lose her medical, and that is just a disaster in the making.

Am I the only one who sees this as a catch 22? I am broke off my duff, so I receive TANF and foodstamps for myself. Brianna receives SSI ($637 a month), so she isn't eligible for TANF or foodstamps. If I get a job making $8 an hour, working full time, I make too much to receive TANF or foodstamps. So I lose that and my medical. My rent is based on income. So if I receive more money, my rent goes up. But if my rent goes up, my TANF income goes up. So if that happens, my rent goes up again. And back and forth, back and forth. Then, there's the whole issue of the SSI. So long as Brianna receives SSI, she is covered by state medical. If I make too much money, she will stop receiving SSI. So then her medical bills come out of my pocket, and I end up broke again. Any and all money I might make beyond what would make me eligible to apply for SSI for her would go to pay the medical bills, since no insurance company is going to cover her therapies and such, with a pre-existing condition. So it seems like there's no getting ahead. If I get ahead money-wise, we lose money, and then we get behind again. If we stay as we are, and don't try getting ahead, then we're still behind, with no room for anything extra. It's a never ending cycle!

Okay, I'm going to stop rambling for now. I've got tons of new pics, since I got that new camera, so I'll post some of those tomorrow.

February 16, 2008 - Feeling Hurt

Okay, so I'm feeling a bit down in the dumps today, and a bit irrationally hurt by something from the Single Parents BBC board.On the board yesterday, one of the hosts posted, calling out all West Coast parents. She wanted to organize a meet up in March or April. So, being a west coast mommy, I responded. Today, the host posted a message to the tune of, "I'm sorry, I forgot that Washington and Oregon are on the west coast to. This is more for the Southern California parents." That really shouldn't hurt me. Really, it shouldn't. It wasn't intended to hurt. It was simply a statement. But all of a sudden, I felt so excluded. As if I've been told, "No, you can't be part of this group, you're not good enough." I KNOW it's irrational. I KNOW it's silly. But it really hurts. And it makes me feel lonely. Maybe I should elaborate a little here. Explain why it is this hurt so much. Ever since I was little, I've had two big fears: the fear of being alone, and the fear of being forgotten. Forgotten at a store by my parents, forgotten in the memories of my friends and family, forgotten on a list of people to call or send a card to. Forgotten. In any way. So for me, there is no phrase more hurtful, more devastating, than to hear, "Oh, I forgot all about you!" And reading, "Oh, I forgot WA and OR are on the west coast," is tantamount to reading, "Oh, I forgot all about you!" I've not made any sort of impact in the minds and hearts of these people that I have spent so much time talking to, commiserating with, listening to, advising, supporting, etc. They don't remember me. They don't care or know enough about me to care. I know this is in part my fault. I could interact more. Post more. But sometimes, being a mommy to such a special child, I feel completely disconnected from parents of typical children. It seriously feels like I'm the only one in Oregon, sometimes, on these boards. Leastwise, the only one in Oregon interested in meeting other parents. I know there is one other person on the Single Parents board from Oregon, but she has remarried, and is planning to move to Reno. And I haven't talked to her that much, as she only posts on the board when she wants to give advice to someone. There are one, maybe two parents from Oregon on the May 2005 board, and I've met one of the mommies, but if there are others, I don't know who they are. Same with the Babies with Cerebral Palsy board. I've met Caitlin, who is an awesome girl, who is also moving to Sweden, but I don't know of any other mommies on the board in my area. My complete lack of other local mommy friends hit me yesterday hardest. It was such a beautiful day. I wanted to go to the park and enjoy the sunshine and the fresh air, but I didn't want to go alone. So I called my friend, Becky, to see if she wanted to go to the park with the kids. She couldn't, because she was babysitting the twins, which meant she had charge of 4 toddlers, and there was no way she wanted to brave that. So I started wondering, "Who else can I call?" And you know? I couldn't think of anyone I could call to go to the park with me. Not one person. I mean, yeah, there's Caitlin. In Silverton. And she's so busy getting everything organized to go back to Sweden (and I don't blame her here...she's a saint for having been gone this long.), I figured she wouldn't have time. So I was SOL. So, CALLING ALL OREGON AREA MOMMIES!!! I need some friends!

February 12, 2008 - About time I updated, eh?

Okay, so I've really been slacking on my updates here. No excuses, except lame ones. I know, I suck. So here's a little rundown of recent activities:

1. Finally got rid of my houseguest.
2. Was in a minor fender bender.
3. Bought a new camera.
4. Updated Brianna's baclofen dosages.

Okay, now to address each issue.

First Event: the departure of my unwanted houseguest

This past Wednesday, to be exact. On Monday, I made her go to an appointment with a counselor at the YWCA. She was making no efforts whatsoever to find someplace else to go on her own, so I called, made her an appointment, and didn't give her the option of not going. She filled out some paperwork, was supposed to receive a bus pass, and, I was hoping, would have someplace else to stay. Unfortunately, though, she didn't end up staying there; she came back, on the conditions that she would be out of the house by 10:00 every morning to look for work, and she could only stay until Wednesday, when she was expected to attend a job fair for T-Mobile.

Well, she didn't get the bus pass. So, on Tuesday morning, I nagged her off the couch, where she had finally gone to bed around 6:30am. This was about 8:45am when I started nagging. She finally got up about an hour later. I gave her money for bus fare, and booted her out the door at about 11:30am. She spent most of the day out, thankfully, and I was able to get some stuff done out of the house without worrying that I'd come back to find everything I own of value having been pawned for drug money. Sounds great, right? Like she's actually being responsible? Eh, just wait.

That night, I made cinnamon rolls, believing she deserved some sort of treat, having been out all day looking for work. I was so proud of her. I told her that the next morning, Brianna had therapy again, and, since I was getting up at 7:30 to get ready, I would wake her up, too. I went to bed that night, having told her this, also telling her that she needed to turn off the television and get some sleep. I can't sleep upstairs if the television is blaring downstairs. Makes sense, right? Well, she didn't end up turning the tv off. I actually came downstairs and turned it off at one point. Of course, later, it was back on. Anyway, about 6:15am, I was just getting back to sleep after having to get up and deal with the television, when I hear a faint knocking downstairs. Of course, since I was hanging on the edges of sleep, it took a few minutes for my brain to register that the knocking was real. I came downstairs, opened the door, and there was some strange guy standing on my doorstep. He said Caity was supposed to have called him at 6:15am, and asked if this was where she was staying. I told him yes, but this wasn't a good time, as everyone was sleeping. Genius just stood there and stared at me. Finally, I hollered at Caity, who didn't wake up. I shut the door, and went and woke her up, told her there was some guy on the front porch. I then went upstairs, woke up my sister, and told her to deal with it. By now, Caity knew she was in BIG trouble. It is totally NOT okay to have some strange guy that SHE'S never even met before show up on MY doorstep, putting my life, my sister's life and, most importantly, my daughter's life, at risk. She didn't know this guy from Adam. He could have been a Ted Bundy wannabe!

So, Caity ended up taking off with this guy. She was gone all day, until she showed up at my sister's work and waited around until she got off work. As soon as she walked in the door I told her, "You need to get your stuff together." Not "stuff" as in her act, mind you, but "stuff" as in her personal posessions, and she knew it. So she started calling around, trying to find someplace to go. I told her she had a choice. Either we could drive her to a friend's house in Albany, Lebanon or Sweet Home, or she could go to a shelter. There would be no more nights on my couch. FINALLY, around 9:00pm, I got rid of her. She went to a friend's girlfriend's house. And from there, I don't know, and I don't care. I am so over it and through with her drama, I don't ever want to see her again.

Second event: A minor fender bender

Okay, so on Friday, I was on my way downtown, taking some cold medicine to my sister at work. I had Brianna in the back seat. I had my tax refunds in the bank. I was raring to go. Coming up on the intersection of Salem Heights and Liberty, the light turned yellow. Knowing I didn't have enough time to make it through, I stopped, like a good girl should. Unfortunately, the truck behind me decided that basic traffic laws and the laws of physics did not apply to him, and didn't stop. No one was hurt, thank goodness, and my car has only some small scuffs, but it was a big pain in the butt. I am still stiff and sore from it. The other guy's truck came out of it a lot worse than my car did. He pretty much crushed his bumper and his grill. Serves him right, as far as I'm concerned.

As soon as I got out of the car, I grabbed Brianna out of her car seat and checked her over. It was a good sign that she was crying. But I was so scared. I kept seeing images of her carseat failing, and her little body being ejected through the window again. Only, this time, she died. Thankfully, there was a nice man there who witnessed the whole thing, who offered to pull my car over to the side of the road, out of the line of traffic, since I couldn't seem to relinquish my hold on Brianna. I took the names of the two people who volunteered to be witnesses, took the information of the guy who hit me, and drove the rest of the way to my destination, fighting back tears and nerves. By the time I got parked, I was shaking so badly, and fighting back tears. So my sister got off work early, and we walked around for a while. That helped. I filed a claim with my insurance company, just to cover my butt, and all is now well.

Third event: Dream Camera Becomes a Reality

This one is pretty simple. For many many many moons now, I have been wanting a Canon Rebel Digital SLR camera. When I filed my taxes and found out how much I was getting back, I decided to get one. So on Friday, that's what I did, And I absolutely love it! It takes such amazing pictures! This is definitely one investment that I will get much use from.

Fourth Event: Updated Dosages for Brianna

Okay, so as I have previously written, we have been giving Brianna baclofen to control some of the tension and reflexes that make movement for her difficult. We started out with a 5mg dose once daily, and immediately noticed some improvement. However, it wasn't amazing improvement. So we upped the dosage to 10mg once daily. While we noticed more improvements, Brianna was constantly tired, and often a little too floppy. So we backed down to 5mg again. Still making her sleepy. So I called the neurologist she sees through the tone management clinic. First, I talked to a nurse for Brianna's other neurologist, who recommended giving the 5mg in two doses, rather than the one, to see if that helped keep her from getting so tired. So, we tried that last night and this morning. Then this evening, I got a call from the clinic neurologist's (Dr. Kao) assistant, who said that, since Brianna seems to need a higher dosage, to try giving her 5mg twice daily, rather than 10mg once daily, and see if that helps. So, that's what we're doing now, and we'll see over the next few days if that helps. I am really hoping it does. Meanwhile, the neurologist doesn't want to increase Brianna's seizure meds, because Brianna is having reflux issues. The nurse thought that perhaps the reflux issues were due to the seizure meds, but Brianna has been on them for almost two years now, with no vomitting previously. So I really don't think they are the cause. I think it's just really bad reflux, and the fundoplication is coming undone. So now we're looking at surgery again to redo the fundoplication. I'm not looking forward to that, but I know it's necessary for Brianna's health. Here we go again...

February 2/3, 2008 - Vent!

Okay, I absolutely have to vent. I can't take it anymore. I need to release some pressure before I run screaming.

Let me preface this by saying I love my sister. And I love Caitlyn, our houseguest. But I am getting SO SICK AND TIRED of cleaning up after them. My house is no longer my own. I never have help with the cleaning. The pathway between the front door and the living room is overflowing with our "houseguest's" belongings. The pantry door is blocked with stuff. There is crap all over the place. I don't get to sleep in my own bed at night. I have to fight to use my own damn computer. I have to fight to sit on my own damn couch. I'm being eaten out of house and home! I haven't seen my bedroom floor in weeks! Since Christmas, probably. Again I say, I love my sister. But I am so tired of having to clean up after her! Having to spend money that should be spent on Brianna for things for her because she blows her money clubbing or doing other things that she doesn't need to do. Yesterday, I spent $200 on groceries, I gave her $20, put gas in her gas tank, mailed $20 worth of packages for her, bought her two new bras because she needed them. Then she had the nerve to get pissed off at me this evening because I didn't want to loan her $20 to go clubbing with her friend! First of all, she goes out entirely too much. Second of all, even if she does get paid on Friday, I really can't afford to be giving her money to go clubbing. If her friend wants to go out so badly, SHE can loan her the money! I don't want to support her drinking habits! In the end, I did end up loaning her $10 to go out, because she was sulking, and I didn't want to deal with her being crabby and sulky all night tonight. I am just so sick and tired of dealing with it all.

Oh, and to top it all off, there's my houseguest. Really, she's a sweet girl. But I just can't take it. She's been here for three days. Her stuff is in my front hallway, so if there was a fire, I'd trip over it to get out. Her stuff is also strewn all over my livingroom. She hasn't tried finding anyplace else to stay, or a job or anything, just sits around. She hasn't done any housework whatsoever, and I'm sick of it! She needs to find someplace else to go tomorrow, by Monday at the latest. I'm not going to deal with it any longer than that.