A Life Less Ordinary

August 11/12 , 2010 - Brianna wants a little brother

2010-08-12T00:53:00.000-07:00

A few weeks ago, Brianna and I were watching cartoons, her favorite pastime. An episode of Max and Ruby came on. You have probably seen it, they play so many reruns. It's Ruby's birthday, and Max has done his job getting her to her surprise party on time. She is opening presents with all her friends, painstakingly unwrapping them to preserve the paper for a later date. Meanwhile, Max is trying vainly to find the perfect gift for her, listening as she raves about the papers and how special they are, and how the gifts they wrap must be especially special because of how beautiful the paper is. So, finally, Max settles on a gift for Ruby: himself, or rather a hug, wrapped up in all of Ruby's beautiful papers.

At the end of the show, Brianna's little bottom lip came poking out, and she burst out in tears. Panicked, thinking she had pinched herself or something, I started asking her what was wrong. Realizing it wasn't an "ouchy" cry, but an "I want something" cry, I started listing off the things I thought she might be desirous of. I talked to her about how she had just had a birthday, reminded her of the wonderful gifts she had just gotten. Then I started asking her, "Do you want __?", listing off all of the gifts Ruby had received for her birthday.

As I spoke to her, she stopped crying, but after every gift I named off, her little lip would poke out again, indicating that, no, that was not what she wanted. So finally, with a sneaking suspicion, I said to her, "You don't want a little brother, do you?" Immediately, she smiled a great, shiny little smile, and cooed her affirmation. Knowing I was about to break her little heart, I patiently explained to Brianna that Mommy can't give her a little brother right now, that she has to have a Daddy first. That little lip immediately came right back out, and the tears started rolling. She finally calmed down when I told her, "Maybe someday you can have a little brother."

So, yeah....combine that with the multitude of friends I have either having babies or getting pregnant right now, and baby fever is crazy for me right now.

Time to Update? Yes! (Please don't hate me for being away so long!)

2010-08-09T15:30:00.000-07:00

Okay, so I know there are probably a lot of people who have stopped checking my blog. And others who check it, sigh, and wonder, "Will she ever update it? It's been two years!!!" Believe it or not, I had an update blog begun...a year ago...but never finished it. I guess things have just been on a bit of a rollercoaster the last couple years, and things are just now starting to level out and enter some sense of normalcy and routine.

Brianna is five now, and growing slowly but surely. She's finally 28.6 lbs. and 39 1/2 inches tall. She's still small for a five year old, but she's a happy girl still. She graduated from preschool this past June, and will start kindergarten in September. While growing up, the summer was always my favorite time of year. Getting to stay home and play all day, running around in the sun, swimming in the creeks. Not so for Brianna. While she loves to swim and go for walks and such, she isn't much of a fan of being home all day. She loves school and interacting with other kids. That's why, though she cries when I drop her off, daycare is so good for her.

Brianna currently goes to daycare five days a week, while I'm working, doing office work for the department of human services. All this work is on a volunteer basis, to pad my resume, in hopes that, once the hiring freeze is over, I'll have a foot in the door to a good, paying job. For me, getting a job working for the state is vital, because not only does it provide good benefits, but it also provides major holidays off, and a set 8-5 schedule with limited overtime. I'm tired of working long hours, swing shifts, and mandatory double or even triple shifts. I'm tired of breaking my back caring for other people, knowing as I do that I will burn out before Brianna needs me the most to provide that same care for her.

As for Brianna's development, she seems to be a very bright and lively five year old. She still doesn't walk unassisted, and only says a few words, occasionally (mom, Nana, Uh oh, Yeah, balloon, I love you), and it's more intonations than actual fully formed words. She still hasn't got a power chair of her own yet, but we currently have one on loan for an indefinite amount of time, for her to practice in when we are home. We also have the loan of an ECO 2 communicative device. She has been using similar communicators for a couple years now, with some degree of consistency, though, as with everything she does, it's on her schedule, and when SHE wants to. There is no rushing, cajoling, convincing, begging, bribing or tricking her into anything if she isn't agreeable to doing it. She is her mother's child, and as such, has a very stubborn streak to her.

Brianna still rules the roost, too. She knows she has everybody wrapped around her little finger, from Mommy right down to her little cousin, Tyson, who is just one year old. She gets her way, more because she's such a sweet little girl, than from any conniving or manipulation. Admittedly, if the television isn't on her favorite shows, she does tend to fuss and cry until it is, but she is, in general, a very happy child, always smiling and laughing. She loves outings, especially to such places as the shopping mall (she loves to pick out new clothes), the riverfront carousel, and just about any place we can walk around. Her favorite person in the world is still her Grammy Mary. Even Mommy quite often takes a back seat to Grammy where Brianna is concerned. Mary still keeps Brianna over night most Sunday or Monday nights, so that I can have a little break from the realities of motherhood.

About three months ago, we had Brianna evaluated by the Spasticity team at Shriner's Children's Hospital. While they think she is an excellent candidate for the baclofen pump, they determined that she is still too small to safely place it, and so we continue with a regimen of oral baclofen and quarterly botox injections into her gastroc muscles. This seems to help significantly, though I am definitely curious to see what kind of results we might have with the baclofen pump. At the same time, as you can imagine, I'm very hesitant about having to put her through another surgery and recovery. As with all surgeries, this one involves some major risks, including the fact that the spinal column is involved in the procedure. So, I'm not too terribly concerned that they've decided to wait a while for surgery. They want her to weigh at least 30 lbs. before they consider surgery. But considering that she has only gained about half a pound in the past year, it could be a couple years still before she becomes a viable candidate.

Well, there's the short version of an update on the past two years. I will post more later. I'm currently at work, on some down time, but have work that needs to be addressed before quitting time. I look forward to updating again soon, and hopefully with more regularity again.

October 17/18, 2008 - Peek-a-Boo!

2008-10-18T01:23:00.000-07:00

Okay, so it's time for an update, I guess. Gotta keep my readers reading, right? But, I'm kinda worn out tonight, so am just going to jump right in with the most recent events, then back track at a later date.

Brianna had a feeding clinic appointment on Tuesday. She really hasn't gained much weight in the past four months or so. And since she's been retching and we've had to decrease her rate of flow on the feeding pump significantly, we can't really increase it again. We've tried, and she just gets really irritable and her tummy gets upset. So, the dietician is having us add Duocal to her formula to increase her caloric intake. So far, she seems to be tolerating it fairly well, with only a slight increase in the retching. We've also doubled her Reglan dose, to help speed the formula through her system, in hopes of cutting down on those early morning and late evening retching episodes. So hopefully, between the two, we can get Bri gaining weight good here soon. As long as she doesn't hit 30 lbs. within the next month....4 lbs. is a bit too much of a weight gain.

Other than the feeding clinic appointment, there's not a lot new here. Bri's babysitter is sick with the flu and pink eye, and her doctor told her she's highly contagious, so, since my sister isn't returning my calls or text messages (gee, how nice....really shows I can count on her...), I'm going to have to call in to work tomorrow. Mary is in Wisconsin, because her mom passed away, and she's getting everything organized there. Damien was in Wisconsin for the funeral, but I don't know if he's back yet or not, and I'd really rather not have to call him, since it feels like such a burden when I do. He's got better things to do anymore. So, unless my sister grows up and returns my phone calls, proving she can be counted on when I need her, then, I get a three day weekend.

You know the ironic thing about my sister's attitude? Just a few weeks ago, she was wanting me to pull Bri out of daycare and get rid of the weekend sitter, so she (my sister) could watch Bri full time and make the $1500 a month that goes to the two sitters. (Yes, you read that right, $1500 a month. I pay $425 a month for childcare, and then a program called Inclusive Childcare pays an additional $1000 a month, give or take, for Brianna, because she requires so much more care than a typical toddler.) But, I didn't pull Bri out, because I didn't think my sister would be reliable. I thought she'd get sick of it before long, and leave me in the lurch, like she has done so many times in the past. And here she is now, my only back up, who swore she would watch Bri any time I needed her to, and she refuses to even return my calls to say she can't watch Bri. Instead, she takes the cowards' way, and ignores me. Scary thing is, though, last night, I tried to call her because I was really drowsy on my way home from work. I had seen the doctor and been prescribed some meds, and they made me drowsy. I was driving from work to daycare to pick up Brianna, and I couldn't focus, and felt really bad. So I tried to call my sister, who lives just blocks away from daycare, to see if she could come drive me home. But, she didn't answer, and didn't return my call or my message. So, I ended up driving home myself, windows down for the cold air, about 10 mph below the speed limit, scared out of my mind that I'd fall asleep at the wheel and hurt my baby again.

Okay, so, reading all of this, my anger at my sister seems pretty ridiculous. But, I can't help but be angry. I'm supposed to be able to count on her. She came to Oregon to be a help to me, to lend a hand when needed. But now that she's got a new boyfriend, has a new job, is going to school, and lives elsewhere, she can't be bothered to even return a phone call. Nevermind the thought of asking her to go to lunch or something. Unless alcohol is involved. I feel as if she can't spare the time for family, she's so wrapped up in her boyfriend. And he's a nice guy. But he's the first one to encourage her to talk to me, to help out, to step up and all that. It isn't him that's doing it, at all. It's her.

Anyway, I think it's the drowsiness from my meds starting to talk now, so I'm going to sign off for now. Otherwise I'm going to start typing real gibberish.

September 20, 2008 - Brianna Plays "Dress Up"

2008-09-20T01:11:00.000-07:00

In our living room, which is a horrible mess, underneath the coffee table, I keep a bunch of Bri's clothes. Mostly jammies, stretch pants, and a couple onesies, usually. It started out of sheer laziness, and me absolutely hating walking up my incredibly steep stairs, which I've fallen down numerous times, both by myself and while holding Bri. So, practicality, too. Brianna was puking all over her clothes fairly regularly, and I hated making 20 trips up and down stairs each day. It was bad enough having to walk upstairs to use the toilet in our 2 bedroom.

Anyway, later, when we started speech therapy at Shriner's, the clothes under the table became a way for Brianna to choose what she wants to wear....I'd give her a choice between two outfits....the one she didn't want to wear, went under the table to be an option the next day. Of course, clothes would pile up....I hate housework, and I work full time.

One article of clothing that has remained under the coffee table for months now is the skirt that you see on Bri's left arm in the picture above. Being size 18 months, the skirt is much too short for Bri to wear anymore, but, it seems to be her favorite article of clothing, because every day, she pulls that skirt out from under the coffee table, and she puts it on her left arm. The skirt is soon followed by her Pirate Dora nightgown, which she drapes over her tummy. This might be followed by a bright pair of jammie pants, or, as was the case yesterday, a pair of jeans draped over her face.

Thus, you have Brianna's version of playing dress up. On occasion, she'll drag every single article of clothing under that coffee table out, and she'll have herself buried in all of it, at which point, she starts either shrieking with laughter, or fussing because she can't see and can't get out. Either way, you can't help but laugh and be absolutely thrilled when she does something that is so typical of a three year old girl.

Note the Dora nightgown in her left hand in the picture below, and the dark denim jeans beside her. It didn't take long before those jeans were draped over her chest.

August 29, 2008 - Finally finishing my Updating!

2008-08-29T02:00:00.001-07:00

So, Brianna has been going to Shriner's Hospital for almost a year now for therapy. She was receiving speech therapy 2x a month, and OT and/or PT once a week. At the beginning of August, Brianna's speech therapist moved to Texas, where her husband received a scholarship to attend grad school, and an opportunity to pursue his dreams as a writer. It was sad to see her go, but, with such a wonderful opportunity being presented to them, it's understandable that they wouldn't want to pass it up. So, in the meantime, Brianna has been without her speech therapist. Because there's always a concern of antiprogress (I can't think of the term I'm searching for right now....), or losing ground, so to speak, Bri's OT, Denee, has been carrying on with some of the therapies from speech in our OT sessions.

A little about Bri's speech therapies....Right now, we're really working to try to give Brianna a system for communicating with us. We have three different ways for her to make choices, actually. The first way we introduced was with object cues. We hold up two objects in her field of vision, and ask her which one she wants. She has to look at the object she wants, (or, as is the case lately, the outfit), look at the person holding the objects, then look at the object again.

The second system we have for Brianna to make selections, is a simple "yes" and "no" system. We use the sign for "yes", and a "stop" hand to sign "no". The right hand is always yes, the left is always no. We ask her a question, ex: "Brianna, do you want to wear your jeans today?" Then we do the two signs, saying each sign as we do it. She'll look back and forth between the two signs, sometimes for several moments. But she eventually makes her choice and focuses on it.

The third system of communication we have introduced with Brianna is switch communication. We start out with two switches called Step-by-Steps. These are switches that are built to record voice commands/cues, as well as multiple stage directions. In the picture above, you can see one of the Step-by-Steps, the red and black button.

We program one of the Step-by-Steps to give Brianna choices, like, "Book, bubbles, computer", or "nap, bath, bubbles", with each choice being one "step". We program the second Step-by-Step to say something like, "That's the one I want!" We then hook the Step-by-Steps up to jelly bean switches, which are smaller versions of the flat, red and black switch you can see in the background of the first picture. Obviously, since Shriner's is non-profit, and all of the equipment is shared amongst several therapists and clients, it's not always possible to have the exact same equipment, or even the ideal equipment, when we need it. So, we make do, with textured switches (the soft, white one on the right side of her head seen below), or the egg switches, (the green one pictured.)

Brianna really enjoys making choices in therapy. One of her favorite choices is "fan". It doesn't hurt at all that, when she chooses the fan, Denee plays silly games with her, like, "Who gets the fan now?" and "Bump your chin with the fan".

We're not certain how much of Brianna's choosing is deliberate, and how much is just reflexive. Our best guess, several months ago, was about 70% deliberate. However, we treat every choice as a deliberate choice, because, regardless of the intentionality of it, it's setting up a pattern of behavior, and teaching Brianna to identify words, and to realize when a choice has been made. So, basically, in a nut shell, that's what Brianna's speech therapy sessions have looked like. Clear as mud, right?

August 24, 2008 - Just for Fun....

2008-08-24T22:50:00.000-07:00

Just for fun, here are some more recent pics.

These four were taken at my company's employee picnic in July. My sister, her boyfriend, and his son all came with Brianna and me to the picnic. They had a bounce house for the kids (It kept collapsing on them, though, because it wasn't properly anchored, until one of the dads had a brilliant idea and staked it down properly.), a treasure hunt, door prizes, prizes for the best costumes, a cake walk, volleyball, horseshoes, and a bunch of other fun stuff. Lying on the blanket there, Brianna couldn't make up her mind whether she was happy or sad. But when we started going for a walk, she decided she was DEFINITELY happy.

This one is just for fun, so you can see how cute Bri is with her glasses on, sitting like a big girl in her wheelchair.

And this is what happens when Auntie is left home alone with the babysitter and the day off from work.

Showing off Brianna's beautiful blue eyes....

August 24, 2008 - Long Awaited....Brianna's Chair!

2008-08-24T22:37:00.000-07:00

All right. As promised, here are pics of Brianna and her new wheelchair. It's a Zippie Tilt 'n Space. Though it's a genuine pain in the butt to load into the back of my car (I'll take pics of that later, so you can see what I mean...), Brianna and I both love it. So does the daycare provider. Brianna spends most of her time in her wheelchair while she's at daycare. Wed-Fri, I leave the chair there, so that she can use it there, and on the other days, it's at home with us. She loves to sit and watch whatever is going on around her. If Doris or I are cooking, she likes to watch. She loves watching her cartoons from that vantage point. She can see faces better, she can see things that are higher up. She can reach better, is cushioned and comfortable. Doris actually told me I need to find a Mon-Fri job, so that she can watch Bri five days a week, rather than just three, she loves her that much. But, since Bri has therapy during the week, having a Mon-Fri 9-5 job isn't feasible. So, our arrangement works for us, for now.

It even has her name embroidered on the back of the seat....see?

August 24, 2008 - Therapy, Bedtime, and Visits with Grammy

2008-08-24T01:49:00.000-07:00

Okay, so from the top....

Brianna is doing wonderfully with driving her chair. She's becoming so bold! She loves to explore new areas. And "Authorized Personnel Only" and "No Admittance" signs hold no authority over her. If a door opens, she wants to go through it. If there's a person talking, she wants to find them to say hi. She LOVES the elevator. It takes her to unexplored levels of the building, including, as pictured below, the outdoor play area on the 7th floor.

Brianna is really getting the hang of driving. She can go in straight lines, she can make turns, and she definitely comprehends things. A few weeks ago, while we were up at Shriner's for PT, Bri, as usual, drove down to the central supply office to get a sticker. I held up two stickers for her to visually chose from. She kept looking back and forth between the two, as if she refused to choose one. So I told her, "If you choose a sticker here, we can go down to the reception area and get another sticker there." She immediately chose the Elmo sticker, and as soon as her chair was turned back on, she turned around, went out the door, around the corner, and down to the reception office, without stopping, without hitting anything, and stopped in front of the window, waiting for mommy to let her choose a sticker. Now you tell me....does it sound like she doesn't know what she's doing?

The weather the last few weeks has been pretty decent. We've had some triple digit days scattered amongst some milder days, scattered amongst some rainy, dreary days. On one of those days, while we were at therapy, the complex manager finally paid someone to come in and spray for ants. Not that it did much good. I mean, seriously. The entire city of Salem is built on one massive ant hill. We were ant-free for a total of about six hours. Now they're back in full force. But on the bright side, that day, Bri and I got to enjoy the nice weather, sitting in the back yard, while I read stories to her and the neighbor kids.

And she definitely loves driving her chair...she gets very upset if we go up to Shriner's, and she doesn't get to drive.

Bedtime around here has taken on some changes, as well. Thanks to Brianna, we are no longer hampered by the strict bedtime of 9pm every night. Rather, we are on what can only be termed as "Brianna time". Meaning, if Brianna wants to stay up till 11:30pm, there's not a darned thing you can do about it, short of putting her in her bed, in which case, she will throw a screaming fit until 11:30pm anyway. To counteract "Brianna time" in what little ways we can, we have taken to doing this at bedtime....

"Grammy" Mary is still a very big part of our lives here in Oregon. She tries to take Brianna for an overnight visit at least once a week, and calls regularly to check on us, make sure things are going well. These pictures were actually from the day after my 25th birthday, when we went to Mary's to have dinner and open gifts.

August 24, 2008 - PICTURE OVERLOAD!!!

2008-08-24T01:46:00.000-07:00

Okay, it's been ages since I updated. So I figured the best way to do that is to accompany it with pics....So I went through all the pics I've taken since the Junior Rose Parade, and chose the best ones to post. The problem is, I've taken a couple thousand pictures between then and now, so narrowing it down was difficult. So I'll probably do this in two or three posts. So please, bear with me. So, beginning with the next post, the last three months, in photos...

June 8, 2008 - Junior Rose Parade

2008-06-08T01:06:00.000-07:00

Okay, I should've posted this on Wednesday, but I got sidetracked and all that. But...on Wednesday, Brianna and I walked in the Junior Rose Parade in Portland. Or rather, I should say, I walked, Brianna rolled along in her stroller. She did amazingly well, too! We were right between two marching bands, and everyone around us had these obnoxious light-up clappers, so I fully expected that she would be completely overwhelmed and crying the whole time. But, she was smiling and happy! We walked alongside a family we met at therapy one day, and occasionally alongside Brianna's PT, who was pushing another little boy in a wheelchair. He was utterly sweet. While we were waiting for the parade to start, Brianna was very fussy. She doesn't like sitting in her stroller when we aren't moving. So, at first I got out a toy for her to play with. She didn't like that much. But the little boy was making the toy make noises for her. When I took Brianna out of her seat to cuddle, he played with the toy, and kept trying to help straighten the straps of the stroller, and trying to straighten my purse, which I set in the seat to keep the stroller from toppling over from the weight on the back. He really was enchanting. And he LOVED those clappers!

Anyway, the parade was about a mile long, but because I had to park near the end and walk back to the beginning, I ended up walking more like 2.5 miles. No big deal. The exercise did me good, even if I was sore afterwards. It also helped work out an ingrown toenail I had. I was scheduled to have my toenail removed because of it on Thursday, but Wednesday night, I soaked my feet, they hurt so bad, and that corner came out! So yay for not having surgery! NOT a good idea to start a new job doped up on pain pills, unable to walk, after having a toenail removed.

Back to the topic at hand...I am so proud of Brianna for how well she did during the parade. She was so calm and cool, and her typical sweet self. She definitely took a lot of stress off my mind by behaving so well through it all. Our theme for this year was "Super Heroes". We all got t-shirts, they fed us lunch, and hung a cape from the back of Brianna's stroller. There were little kids dressed up in full on superhero gear. A pink Superwoman, a firefighter with a super soaker, a Batman, a fairy princess, and many others. There were also two service dogs who wore t-shirts, and one little Yorkie named Natalie, with a pink bow on her head, who rode along in a stroller.

Brianna, waiting for the parade to start

This is one of the service dogs (I can't remember his name)

Natalie on her royal throne

Some of the clowns and others waiting for the parade to start

More people waiting...see the capes?

The lady on the left, with the green clapper, is Lynn, the PT student who has been observing our sessions.

June 7/8, 2008 - Time for Another Update

2008-06-08T00:58:00.000-07:00

Well, for the past month and a half, I've been looking for work. And I finally found a good job with great benefits. I start working on Monday as a Direct Support Provider. Basically, that's a fancy title for a caregiver. I'll be working in a home for developmentally disabled individuals, helping them get up, dressed, bathed, fed, and off to jobs they might have. I'll be doing cooking and cleaning, and supervising any outings we might have. And like I said, there are great benefits. After six months, the employer pays for medical, vision and dental insurance, as well as AFLAC, and a CostCo membership. I get paid vacations, paid sick days, and paid holidays, including my birthday. Or, rather, any day within my birth month. Oh, and I get a raise at 6 months and at 12 months, if I've received all my certifications. And after a year, I have the opportunity to do more training and move up the ladder, get a bigger check, and eventually maybe even "mother" my own house. How exciting is that? Oh, and my supervisor worked it out so that I can have Mondays and Tuesdays off, so Brianna's therapies don't have to suffer for it! And I'll be working primarily day shift!

Brianna is doing really well being back in daycare. She has had some difficulty going to sleep recently, but if the last two nights are anything to go by, we should be over that now. Unfortunately, Brianna's daycare provider isn't open on the weekends, so I was going to have my sister's friend watch Brianna for me. She had said she wanted to, and every time I would call her, just to make sure she was still interested, she would say she was. So on Thursday, I called her to let her know I got hired on, and I was going to start needing her to work, and she said, "Oh, well, I've got so much going on this summer, I don't want to do anything on the weekends." So, I've been scrambling to find weekend childcare. I posted on ad on Craigslist, under the childcare section and in the jobs section under et cetera. And now I'm up to my eyeballs in applicants! I posted the ad on Thursday night/Friday morning (about 2am). Since then, I've had at least six applicants that I can remember. I interviewed one guy tonight. He's 19, a student at a local Bible college, and seems really sweet. He came by about 7pm, and I had started a stew on the stove, around 6:30pm. He stayed till almost 9:30, learning about Brianna, asking questions, playing with Brianna. About 9:00, my stew got done, so I invited him to eat (I made a big pot of it...put some in tupperware to freeze, some in tupperware to take over for Bob and Mary, and some in tupperware for leftovers). He asked me to give his girlfriend cooking lessons :-P. He said she loves to cook, wants to be a chef, but no one has the heart to tell her she's a horrible cook. So I guess he liked my stew :-P. I finally sent him on his way about 9:30, when it was time for Brianna to go to bed. I really did get a good feeling from the guy. He said he would like to go to school to become a kindergarten teacher, once his term at Bible college is over.

Tomorrow, I have an interview at 4:00 with a 21 year old girl who seems very nice, has good experience with childcare. I'm trying to set up another interview with a mom of five kids who wants to watch Brianna, as well. I would have to transport Brianna there, though. There's also another DCP who I might interview, if all else fails. Her rates are $4 an hour for Brianna, $3 an hour normally, so she's entirely reasonable in her rates. She has no experience with children with disabilities, but only one of the other applicants does. That applicant is 20 years old, and is a premed student, hoping to specialize in tropical diseases. She spent time doing volunteer work with the Ruel Foundation in the Phillippines, working with children with cleft lips, clubbed feet, and other disabilities. She is also certified through the World Health Organization in the integrated management of childhood diseases. She currently works full time at Applebee's, and leads the Wednesday Kids Night there. This girl's resume and experiences is seriously impressive. I have a feeling I'm going to have an incredibly difficult decision to make on this one ladies and gents.

May 26, 2008 - Video of Brianna Laughing

2008-05-26T01:01:00.000-07:00

Here's the video my sister took of Brianna laughingon her birthday. She was so excited all day, she KNEW it was a special day!

May 25, 2008 - Happy Birthday Brianna!

2008-05-25T22:37:00.001-07:00

Well, Brianna turned three on Friday. We celebrated tonight, since Mary was in Wisconsin until last night. It was a good birthday for her. On the day before her birthday, we got Brianna's new Rifton bath chair delivered. It had been sitting in the medical supply company's office for a couple weeks, I guess, because they couldn't track us down. Yeah. That's how long it takes to get approval from insurance. We moved to our new apartment March 20th. And the address on the forms was our old one. So, yeah. It's been a while. But some things take longer. That day, we also got a call to let us know that Brianna's wheelchair is almost ready. It will take about three more weeks, because they have to wait for final approval from the insurance company, which takes 2-3 weeks. Then, I'll be posting pics of Brianna in her pretty purple wheelchair.

On her actual birthday, Brianna had fun. She went to daycare, where they sang "Happy Birthday" to her all day. Then, on the way home, she was roaring at me from the back seat. Later in the evening, she got to talk on the phone with Grammy Mary, who was in Wisconsin visiting her mother for two weeks; and she got to talk to Gramma Betty and Grampa Allen. All that talking on the phone got her really excited, and she spent the rest of the evening squealing and propelling herself back and forth across the living room floor. Then came bath time with her new bath chair. When I got her naked for her bath, she got even MORE excited. Her Auntie Sarah got some great video with her phone of Brianna squealing, arching and flopping, but I have to look at it to make sure it isn't x-rated, since Brianna WAS naked.

On Saturday, we went over to Grammy and Bobo's to do some cleaning (since Bobo has been home alone for two weeks...we expected the house to be a mess...it was surprisingly clean!) and some laundry. I had a pleasant surprise when I checked my bank account, because my state income tax was finally deposited in my account. So we went shopping. Got some groceries. I got some new bedding for my bed, some new sheets, a new bedskirt, and an embroidered quilt, since the weather is warming up, and a comforter is becoming too heavy. After shopping, we came home, and I barbecued and made cupcakes for the neighbor kids, who, by the time they were done, had to go inside for the night. Then, after Brianna went to bed, I set about making her teddy bear cake. It turned out great, and was really yummy.

For her birthday, Brianna got lots of clothes, both from me and from Grammy. She got a cute little sporty outfit from Damien, and she got a rocking horse that sings "Home on the Range" from Grammy. From Gramma Dorothy (Mary's Mom), Brianna got a necklace with a birthstone angel pendant attached. It's a bit big for her, but we can either get another chain for it, or save it until she is older.

All in all, Bri is doing well so far. She's still her contrary self, running into walls with her power chair, turning circles, and going into unauthorized places. But she's happy as can be, so we can't really get mad at her.

May 3, 2008 - 50 Steps!

2008-05-03T23:09:00.000-07:00

Okay, update time!

In the past two weeks, there's been quite a bit happening. First of all, Brianna started back at daycare again, so that I can look for work. So far, there've been no interviews or anything yet. But I'm still looking. Brianna does well at daycare, but when I drop her off, she has to do the token fussing and resisting to remind me that I had better come back for her. But as soon as that door is shut behind me, she's happy as a clam. It's like a light switch. Seriously, that fast. No real tears, even.

In therapy, Brianna has been developing a distinctively stubborn and contrary streak, especially when we have occupational therapy at Shriner's. Whether we have OT or PT, Brianna always spends some time driving in the power chair. When we have OT and put her in it, she absolutely HATES to go any direction you tell her to. Ask her to go straight, she turns circles. Say, "Let's go get stickers", she goes to look at the fish. Say, "Let's go look at the fish", she goes towards the sky bridge. If she hears the elevator, she tries to get on it. If she sees a door open, she wants to go through it. Voices are another adventure for her. She'll go anywhere she hears voices. She runs into walls, just for the fun of it. "Authorized personnel only" signs hold no meaning for her. Nor do the words, "Stop" or "Let's go..." And the entire time she is contradicting every word you say to her, she has a great big grin on her face!

Now, in contrast, when we have PT, Brianna is a perfect angel. She drives in straight lines, with minimal crashes into walls or doorways. You say, "Let's go get stickers", and not only does she go to the room, but she does her little circle to turn around and see the stickers, WITHOUT trying to go into the central supply room first! She just tools up and down those halls, as sweet as can be, happy as a clam, minding everything Molly says. Of course, as soon as Denee, the OT, shows up, which she does if she has spare time during our therapy hour, Brianna starts being a little stinker again. And I know it isn't because she dislikes either one of them. She loves them both! She immediately gets full of smiles when she sees either one of them. I think it's just because Denee gives her a little more freedom than Molly does, maybe. When Bri drives with the PT, often Molly will walk along behind, with her hands on the handles, that way she can easily correct if Brianna needs the help. There is no guiding the chair with the handles while it is in drive. It's too heavy. So I know that it isn't Molly keeping Brianna straight through her own force. In contrast, when Denee puts Bri in the chair, she walks along side, or a couple feet behind, so she's a few steps away, close enough to reach if necessary, but far enough away that Brianna doesn't feel like she's being crowded or pushed. It's amazing to compare their different styles of teaching and therapy.

Now, as for the title of this thread...Yes, it means Brianna took about 50 steps! In PT on Thursday, Brianna was NOT a happy camper in her walkabout. She just couldn't seem to get that right leg to do what she wanted it to, so she was standing still quite a bit. So, Molly took Brianna out of the walkabout, and just held her under the arms. And Brianna walked about 25-30 steps away from me that way. Then she walked back to me that way. It was amazing! She was so happy, and you could tell from her grin and the happy sounds she was making that she was proud of herself! She was awesome! I wish I would have remembered to bring my camera. From now on, I do not go to therapy without it. There are too many important milestones that I might miss if I don't have my camera.

Anyway, it's late now, and I'm tired, so I'm going to end this entry here. I'll update on Brianna's progress in speech therapy tomorrow or the next day.

Oh, and Damien, we haven't seen you in a while, but I know you're probably reading, and I wanted to let you know that any time you want to see Bri or spend time with her, all you have to do is let me know. You're more than welcome to come see her, or keep her overnight, or even just for a couple hours, if you want to. All ya have to do is ask.

April 19, 2008 - Brianna has a cold

2008-04-19T20:49:00.001-07:00

Well, Brianna has a horrible cold right now. Nose running constantly, eye buggers, fussy, and lots and lots of snot. Snot galore. Buckets of it. Never ending snot. But, she seems pretty happy. Peachy, actually.

Oh, and have I mentioned lately that she has developed a stubborn streak? Lately, when we go up for therapy at Shriner's, she has gotten very stubborn and contrary. You say "Go left", she goes right. You say, "Let's go down here...", she starts turning circles. You ask if she wants stickers, she goes to the fish, and vice versa. And she has a grin on her face the entire time. She deliberately runs into walls. She runs over feet. She follows people. She is so precocious! And I'm loving every minute of it.

When you've got a non-mobile, non-verbal child who doesn't seem to be outgrowing those baby looks, like Brianna, it's easy to forget that she is almost 3 years old. Most 3 year olds are showing their little personalities. But to me, Brianna has been eternally an infant. So when I see little snippets of her personality coming through, it's amazing to me. It reminds me just how wonderful and special she is.

Like, the other day...she was so quiet and calm, I fell asleep on the couch, watching cartoons with her. Next thing I know, she's shrieking happily...I look down, she had gotten into a bag of cotton balls and strewn them all over herself (I know, Melissa, you're probably cringing and shuddering right now). She had clothes all over herself. And she was absolutely thrilled. So, I couldn't be upset with her.

April 12, 2008 - The Story of Audrey Caroline

2008-04-12T01:37:00.000-07:00

As mommy to a child with developmental disabilities, sometimes I become overwhelmed by all the facts, the diagnoses, the prognoses, the prescriptions, the therapies, etc. etc. etc. I forget what a blessing Brianna is to my life. Two things tonight have served to drive home just how special she is.

It's funny how something as simple as a television show can impact someone so much. I was watching the show "Secret Life of a Soccer Mom" on TLC. Tonight's episode featured a woman who, for the past six years, has stayed at home with her children, a daughter and a son. Her decision to be a stay at home mom came when she was five months pregnant and found out that her son would be born with Spina Bifida. To top it all off, she later found out that her son is mildly autistic.

This woman is amazing. Her son is on more medications than I ever want to see Brianna prescribed. It would be difficult enough to deal with the issues that come along with spina bifida. Trying to get a disabled child to do something in therapy, when they are tired, in pain, and fed up, is difficult enough. But you add on the added issues of autism, the behavioral issues, the ticks and quirks, and I'd probably tear out my hair. And she does it on her own. Her husband works constantly, leaving as early as 3am, and getting home, sometimes not until 8 or 9 pm. And yet, she gives props to single moms. She says she doesn't know how we do it. I don't know how she does it. I really don't.

Anyway, something she said during the show really impacted me. She said that, staying home with the kids, giving up her career, giving up a part of herself, in essence short changed her kids. In order to be the best mom she can be, she has to do things for herself, too. I know this is a concept that is constantly thrown out there for moms. But as a parent of a disabled child, you often feel as if you have to be there 100% of the time. This was an observation this woman made, as well as an observation I've made numerous times. It feels like a betrayal to leave Brianna in the care of someone else and go to work. Who's going to make sure she gets the exercises she needs? Who is going to cuddle her and soothe her when she has a retching spell or a seizure, or a noise startles her? Who is going to go to her appointments, her therapies, her classes? Who is going to be the voice for her and her needs, if I'm too busy working to speak up? And so, it's been easier to stay home with Brianna, to live, or rather, subsist, off of welfare and SSI. It's less scary. But the fact of the matter is, by staying home with Brianna, by not doing anything for me, by becoming a shadow of myself, I am doing neither of us a favor. Brianna will never learn to survive and thrive without me, if I don't give her the chance to learn. So, I'm going to look for work again. For certain this time. My baby is too important to me to continue living the way we have been.

The other event of tonight: I read a blog that a friend, Denise, posted a link to, and it absolutely broke my heart. Those of you familiar with Christian music might be familiar with the group, Selah. Well, one of the wife of one of the group members created a blog to chronicle the journey of her pregnancy with her daughter, Audrey Caroline. It's a bittersweet story, with a bittersweet ending. But it's threaded throughout with so much love for this child who, through her life and death, has touched the lives of so many others. Knowing that their daughter would probably not live, that the chances were so very slim, the Smiths still chose to carry her, to bear her, and to love her, as if she were not dying. As if, from her very conception, she was more than just their daughter. She was a miracle. The words to describe the impact of this story on me escape me. It's beautiful, and poignant, and my heart aches and lifts with the emotions. The most important thing it has shown me, though, is how very lucky I am to have Brianna with me. To be able to love her, and see her smile, and know that, thanks to God and the efforts of so many doctors, she is alive and with me, regardless of any disabilities she has. I am so very blessed by her, in so many ways.

April 8, 2008 - For Jessica

2008-04-08T14:51:00.000-07:00

So, I haven't posted pics of Bri in her walkabout yet, and I've had them for a while. We finally got her walkabout today, but I haven't taken pics of it without her in it. These pics are from Feb. 28, when we were up there for therapy.

April 6, 2008 - I've HAD it!

2008-04-06T21:36:00.000-07:00

Okay, I know I've been complaining about my sister a lot lately, but this time, seriously, I've about had it!

I tacked on $150 a month to her rent for groceries, toilet paper, soap, etc, because she wasn't helping buy anything. I told her before she got paid the time before last that she needed to buy toilet paper. She didn't. I ended up having to use money I had set aside for gas to buy tp, because she blew her check. So, she gripes and moans about having to pay $150 a month for that, saying I don't spend that much, and she wants to know how much of that $300 total a month I spend on stuff she doesn't use. So I told her, "Let's see...I bought a $10 pack of diapers, some deodorant, and tampons." But wait. She uses the deodorant and tampons because shes' too lazy to buy her own. So that means out of $300 worth of groceries and stuff this month, $10 was on stuff she won't use. If she gripes next month, she can buy her own darn soap, tp, deodorant, tampons, food, etc.

Okay, so that's not all. My sister has two jobs. One part time, one full time. She pulls in more money per month than I do, by far. But who do you think is always borrowing money from whom? And I have more bills to pay! I have $120 a month car insurance bill that she doesn't pay! I have other bills that she doesn't pay!

Oh, wait, it gets better. Sarah was scheduled to work from 8:30-4:30 on Saturday at the full time job, and from 5:00-10:00 at JC Penney. She went out partying on Friday night, and then called in sick to both jobs! Then, she showed up at home, showered, got dressed, and went out again at 8:30 last night! She was supposed to work from 8:30-4:30 again today. But she called in AGAIN! And now she's out SHOPPING! Did she bother to call me and let me know that she was okay? NO! Did she stop to think that, having not heard from her in 22 hours, I might be a bit worried? NO! I am just so SICK of her irresponsible, teenager attitude! If she calls in to work because she's hung over ONE MORE TIME, she's GONE! I'm serious. She can pack her sh*t and leave, and I'll throw a party in her wake!

I am SICK of cleaning up after her, cooking for her, doing her laundry, picking UP her laundry, throwing away her trash, supplying her every little need, loaning her money, then having her nit pick about just how much she OWES me, having her complain when I want to DO something. I mean, heaven FORBID I should ask her to watch Brianna for a night so I can go out and DO something anymore! The only time I get to go out anymore is if Mary takes Brianna, or if I pay a babysitter. And then, it's usually with my SISTER, because she doesn't think it's RIGHT for me to go out by myself, and considers it her duty to go out with me! I mean, yeah, it's nice to be able to hang out once in a while. But it's also nice to get out on my own and feel HUMAN. To go out on a date once in a while! I am just so completely SICK and TIRED of all this cr*p!

I'm dead serious. If she pulls a stunt like this just one more time, she's gone. I don't care if I have to scrimp and save every penny, or borrow from Mary or Damien to make ends meet. I'd rather do that and not have to deal with her antics. That is IT!

April 3, 2008 - Thinking About Becoming A Parent?

2008-04-03T16:18:00.000-07:00

Thinking of Having Kids? Do this 11 step program first!

Lesson 1
1. Go to the grocery store.
2. Arrange to have your salary paid directly to their head office.
3. Go home.
4. Pick up the paper.
5. Read it for the last time.

Lesson 2
Before you finally go ahead and have children, find a couple who already are parents and berate them about their...

1. Methods of discipline.
2. Lack of patience.
3. Appallingly low tolerance levels.
4. Allowing their children to run wild.
5. Suggest ways in which they might improve their child's breastfeeding, sleep habits, toilet training, table manners, and overall behavior.

Enjoy it because it will be the last time in your life you will have all the answers.

Lesson 3
A really good way to discover how the nights might feel...

1. Get home from work and immediately begin walking around the living room from 5PM-10PM carrying a wet bag weighing approximately 8-12 pounds, with a radio turned to static (or some other obnoxious sound) playing loudly.
2. Eat cold food with one hand for dinner
3. At 10PM, put the bag gently down, set the alarm for midnight, and go to sleep.
4. Get up at 12 and walk around the living room again, with the bag, until 1AM.
5. Set the alarm for 3AM.
6. As you can't get back to sleep, get up at 2AM, make a drink and watch an infomercial.
7. Go to bed at 2:45AM.
8. Get up at 3AM when the alarm goes off.
9. Sing songs quietly in the dark until 4AM.
10. Get up. Make breakfast. Get ready for work and go to work (work hard and be productive)

Repeat steps 1-9 each night. Keep this up for 3-5 years. Look cheerful and together.

Lesson 4
Can you stand the mess children make? To find out...

1. Smear peanut butter onto the sofa and jam onto the curtains.
2. Hide a piece of raw chicken behind the stereo and leave it there all summer.
3. Stick your fingers in the flower bed.
4. Then rub them on the clean walls.
5. Take your favorite book, photo album, etc. Wreck it.
6. Spill milk on your new pillows. Cover the stains with crayons.

How does that look?

Lesson 5
Dressing small children is not as easy as it seems.

1. Buy an octopus and a small bag made out of loose mesh.
2. Attempt to put the octopus into the bag so that none of the arms hang out.

Time allowed for this - all morning.

Lesson 6
Forget the BMW and buy a mini-van. And don't think that you can leave it out in the driveway spotless and shining. Family cars don't look like that.

1. Buy a chocolate ice cream cone and put it in the glove compartment. Leave it there.
2. Get a dime. Stick it in the CD player.
3. Take a family size package of chocolate cookies. Mash them into the back seat. Sprinkle cheerios all over the floor, then smash them with your foot.
4. Run a garden rake along both sides of the car.

Lesson 7
Go to the local grocery store. Take with you the closest thing you can find to a pre-school child. (A full-grown goat is an excellent choice). If you intend to have more than one child, then definitely take more than one goat.

1. Buy your week's groceries without letting the goats out of your sight.
2. Pay for everything the goat eats or destroys.

Until you can easily accomplish this, do not even contemplate having children.

Lesson 8

1. Hollow out a melon.
2. Make a small hole in the side.
3. Suspend it from the ceiling and swing it from side to side.
4. Now get a bowl of soggy Cheerios and attempt to spoon them into the swaying melon by pretending to be an airplane.
5. Continue until half the Cheerios are gone.
6. Tip half into your lap. The other half, just throw up in the air.

You are now ready to feed a nine- month-old baby.

Lesson 9
Learn the names of every character from Sesame Street , Barney, Disney, theT eletubbies, and Pokemon. Watch nothing else on TV but PBS, the Disney channel or Noggin for at least five years. (I know, you're thinking What's 'Noggin'?) Exactly the point.

Lesson 10
Make a recording of Fran Drescher saying 'mommy' repeatedly. (Important: no more than a four second delay between each 'mommy'; occasional crescendo to the level of a supersonic jet is required). Play this tape in your car everywhereyou go for the next four years.

You are now ready to take a long trip with a toddler.

Lesson 11
Start talking to an adult of your choice. Have someone else continually tug on your skirt hem, shirt- sleeve, or elbow while playing the 'mommy' tape made from Lesson 10 above.

You are now ready to have a conversation with an adult while there is a child in the room.

March 30, 2008 - So cute!

2008-03-30T16:32:00.000-07:00

Okay, so, yesterday was an extremely fussy day for Brianna. She refused to nap in her crib. She didn't like being on the floor. So I put her in her high chair, so she could watch her cartoons from a different angle, then I went into the kitchen. I had a peach cobbler in the oven. I took it out, came back into the living room, sat down to check my email. Five minutes later, I looked behind me, and htis is what I found:

March 29, 2008 - Not Much New Here

2008-03-29T00:50:00.000-07:00

Well, there's not much new here today. Brianna has a cold, which is making her miserable. On top of that, she's not adjusting well to nights in a new apartment. Tonight, she started falling asleep on the floor by 8:00pm. I would've put her to bed right then, if I hadn't needed to give her her meds still. So she ended up going to bed promptly at 9:00, which is supposed to be her bedtime. Well, she fussed for almost an hour, until I went upstairs and got her out of bed. I cuddled her for a few minutes, then took her back up, put her down, and hooked her back up to her feeding pump. She fussed off and on from that time, which was about 10:00pm, until almost 12:30am. She would sleep for a few minutes, then wake up and fuss for a few minutes. Sleep. Then fuss. It's both heart wrenching and frustrating, because she needs her sleep, and I need the break and the peace, but I can't bear to hear her crying. It's so frustrating trying to do it all alone. It's times like that when I really miss Damien, and having his help.

Anyway, other than that, not much new here. Same old struggles, same old frustrations. You know the drill.

March 26, 2008 - Quick Update

2008-03-26T15:21:00.000-07:00

Just a quick update for you all who might be curious as to what's going on with us. We got all moved in to our new apartment. Took about 5 days of moving stuff, and a couple hours of cleaning, but it's all done. We've got most everything unpacked and set up, too, and it's starting to feel like home.

Brianna's Walkabout is ready for pick up. But since the PT is gone all week, we don't get to pick it up until April 3rd, when we see her next. But I'm excited to get it. And we have room for it now, in our new aparment :-).

Other than that, nothing new. A lot of emotional stuff going on for me right now, but I won't blog about it here. If you have access to my other blog, you can read about it there. Thanks for checking in!

May 17, 2008 - Brianna's Smiles

2008-03-17T23:37:00.000-07:00

"Brianna smiles. It lights up her face. Her eyes glow, her cheeks dimple, and those four little teeth peek at me, barely risen above the gums. She kicks and coos, and I swear she must be the happiest baby in the world."

I wrote that a few months ago when I was taking a writing class through the community college. It was part of an "image notebook" we had to keep: in depth descriptions of things we saw, felt, heard, tasted, or smelled throughout the week.

Of all the things about parenting that there are to love, it's Brianna's smiles that I love the most. They're always so open, and so freely given. They're so contagious. And she is completely unable to contain them. Even when she's pouting, you can make her smile. She might go right back to pouting after the smile, but she can't help but smile, regardless.

Today, Brianna was exceptionally giggly. Standing in line at the pharmacy at Wal Mart, waiting to pick up Brianna's formula, Brianna started to get fussy. All it took to have her laughing was a dip. Just a lowering of my right arm, a raising of my left, so that she was tipped upside down, and she was giggling and smiling again.

Later, we took a lunch to my sister at work, and sat and visited with Auntie and the cook, who is a friend of mine, and Brianna was kicking and stepping and arching away, happy as can be. After a while, that gets to be tiring. Especially when she starts tryign to knock us both backwards. So, I started dipping her again. She started laughing and smiling again. I had her sitting on my knees, my hands behind her back, dipping her back and forth. Every time I would raise her up, she would roll her eyes back in her head and tip her head back again to show me that she wanted to go backwards again. She took such glee in such a simple action, it was wonderful.

Later still, creeping up on bedtime, I was playing with her yet again. Doing the same thing. And she was busting out into gales of laughter. Uncontrollable belly laughs, the kind that you can't help but laugh along with. And in that laugh, I didn't hear a baby. I heard a little girl. And I had to face the truth: my baby girl is growing up. She isn't a baby any more, no matter how much she may still look like one, and no matter how much I want her to still be one. She's learning to do things, taking in her surroundings, and becoming so much a little girl, I can't help but look ahead to the years to come, and imagine who she will become. She's such an amazing little thing, and her capacity to learn and do things is as yet untested. It's only been 2 1/2 years since the car accident. Studies show that brain injuries can continue to heal up to 4 years after the injury. So by that token, Brianna can still make some amazing progress in her growth and development. Not to mention the fact that she's not quite three years old. To me, there is still hope for the things she might one day be able to do. Granted, she will more than likely never perform brain surgery, or any kind of surgery for that matter. But she could learn to talk. She could learn to put on a pair of socks. There are still so many things left that she might yet learn to do. And all of those things flash through my mind every time Brianna smiles.

March 13, 2008 - Brianna's Chair

2008-03-13T19:00:00.000-07:00

Okay, so the big news of the week: we finally had Brianna measured for her manual wheelchair! We're going for the metallic purple frame with the black upholstery and lavender accents. And it'll have her name embroidered on the seat back. It will take probably two months to get the chair, from the therapists writing the letters, to the doctor sending the referral to insurance, to insurances approval, and the creation of the chair. So maybe by Brianna's birthday, we'll have her wheelchair! That would be so awesome!

In other news, we get to start moving into our brand new 3 bedroom apartment on Wednesday. Well, not brand new. But new to us. It's in the same complex, just with an extra bedroom, a half bathroom downstairs, and a few extra feet of living room. So MAYBE we will have room to put up the dining table, even with Brianna's therapy equipment in the living area.

While this new three bedroom means more room, it is still a two story, and it is still not wheelchair accessible. So I really need to find someplace more suited for our needs. Towards this end, I intend to go down to the housing authority and fill out paperwork to be put on the HUD housing list. Where Brianna is disabled, we'll be bumped to the top of the list. That way, we can maybe find a three bedroom one story house and be able to afford it. That would be awesome. Have a third bedroom to put her therapy equipment in, and still have it one story, so dragging out the equipment isn't a total hassle. Plus, I could set up my scrapbooking stuff in the extra room, too. So it'd serve dual purposes.

So that's the news on this front. What's new with you?

March 7, 2008 - Survey Says...

2008-03-07T21:16:00.000-08:00

Adopted this from Jessica's blog.

MOUTHOLOGY

Q. What is your favorite fast food restaurant?
Probably same as Jessica...Taco Bell. Sometimes I just don't feel like eating a burger or fried chicken. But even when nothing sounds appetizing, if I get something at Taco Bell, it is good. Except that one time when the chicken was all dried out and yucky...

Q. What is your favorite sit-down restaurant?
A. Applebee's or Red Robin

Q. On average, what size tip do you leave at a restaurant?
A. Typically 10-15%, sometimes, if I'm feeling generous, more. Really, when my sister and I go to a sitdown restaurant, 10-15% of the check is only about $2-3.

Q. What food could you eat every day for two weeks and not get sick of?
A. Umm...none...I get tired of food quickly. I'm not big on food, really. I wish we could exist without it.

Q. What are your pizza toppings of choice?
A. Hawaiian. That's Ham, pineapple and olives. Occasionally tomato. If my sister isn't here.

Q. What do you like to put on your toast?
A. butter and a little bit of jelly or jam. Usually strawberry or seedless blackberry

TECHNOLOGY

Q. What is your wallpaper on your computer?
A. Me and Brianna last August at Foster Lake

Q. How many televisions are in your house?
A. Just the one in the living room

BIOLOGY

Q. Are you right-handed or left-handed?
A. Right handed

Q. Have you ever had anything removed from your body?
A. Yes. Tonsils and adenoids, gall bladder, and a child. Oh, and I think a couple of bone shards from my nose when the doctor straightened it back out after the crash.

Q. What is the last heavy item you lifted?
A. Hmm...I just carried a bag of clean laundry upstairs. But I think Brianna might be heavier, and I carried her into the house shortly before that. Then again, the basket of wet towels I carried downstairs earlier was exceedingly heavy. Talk about back breaking!

Q. Have you ever been knocked unconscious?
A. Yes....been put under anesthesia. I blacked out, which caused our wreck. And I passed out again after the guy stopped to make sure Brianna and I were okay.

BULL****OLOLY

Q. If it were possible, would you want to know the day you were going to die?
A. No, because then I'd spend all of my time worrying about that day.

Q. If you could change your name, what would you change it to?
A. I wouldn't change my first name. Someday, though, I'll change my last name. Maybe to McConnaughey or Depp or something like that....

Q. What color do you think looks best on you?
A. I don't know, really.

Q. Have you ever swallowed a non-food item by mistake?
A. dirt, sawdust, flies, I'm sure, growing up around goats, there has been a bit of manure in there, too...and hay. Lots of hay

Q. Have you ever saved some one’s life?
A. Not to my knowledge

Q. Has someone ever saved yours?
A. Well, I guess you could say the doctor did. I mean, she didn't let me bleed to death on the operating table during my c-section. So technically, my life was in her hands.

DAREOLOGY

Q. Would you kiss a member of the same sex for $100?
A. Possibly

Q. Would you allow one of your little fingers to be cut off for $200,000?
A. No....I'm not good with pain.

Q. Would you never blog again for $50,000?
A. As long as I could write in journals.

Q. Would you pose naked in a magazine for $250,000?
A. I might, depending on how tough times were.

Q. Would you drink an entire bottle of hot sauce for $1000?
A. No way, no how.

Q. Would you, without fear of punishment, take a human life for $1,000,000?
A. No. Not a chance. Not for any amount of money. Unless my daughter's life was in danger.

DUMBOLOGY

Q: What is in your left pocket?
A: Nothing. I'm in my jammies now. I don't use my left pocket often, anyway.

Q: Is Napoleon Dynamite actually a good movie?
A: Umm...I couldn't sit through the whole thing. I hated it.

Q: Do you sit or stand in the shower?
A: Unless I am drunk, sick, or pregnant, I stand.

Q: Could you live with roommates?
A: I have my sister as a roommate. And Jess, Caspar does NOT live with you! He's here! He's mine!

Q: How many pairs of flip flops do you own?
A: Four or five, I think.

Q: Last time you had a run-in with the cops?
A: Last time I had any dealings with a police officer was August of 2005, when they were questioning me about the accident.

Q: What do you want to be when you grow up?
A: Always wanted to be a wife and mommy

LASTOLOGY

Q: Last Friend you talked to?
A: Mary, I think.

Q: Last person who called you?
A: Sarah

FAVORITOLOGY

Q: Number?
A: 3

Q: Season?
A: Summer....love the warmth and the green and the flowers. Summer here is generally relatively mild, so we still have lots of the spring blooms.

CURRENTOLOGY

Q: Missing someone?
A: Yes.

Q: Mood?
A: depressed.

Q: Listening to?
A: A Backyardigans song on Noggin

Q: Watching?
A: the computer screen. Brianna is watching Noggin behind me.

Q: Worrying about?
A. Too much.

RANDOMOLOGY

Q: First place you went this morning?
A: To get Brianna out of her bed.

Q: What can you not wait to do?
A: I don't know. Go to sleep, I suppose.

Q: What’s the last movie you saw?
A: The Spiderwick Chronicles in theaters. We Own the Night on DVD.

Q: Do you smile alot?
A: Depends on the day and my mood. Somedays are better than others.

Q: Are you a friendly person?
A: Most of the time. But I'm also shy.

March 3, 2008 - I've been TAGGED!

2008-03-03T17:55:00.000-08:00

Okay, so I was reading Jessica's blog, and she got tagged. She had to tag four other people. I was one of them. Dunno when she planned to tell me, but this is a preemptive strike, so she doesn't have to :-P.

10 years ago-- I was 14, it was the tail end of my freshman year of high school. If we're talking exactly ten years ago, down to minutes and seconds, there's probably a 95% chance I was at Alysha Howell's house, or she was at mine. Either way, we were probably together. Probably looking at her new 4-H pigs.

5 Things on my to do list today were:
Umm...nothing, really. Today was a pretty uneventful day. Let's see if I can think of five things.
1. Eat a bowl of multigrain cheerios
2. Check the mail (My Sister's Keeper STILL isn't here, Jess...darned mail system!)
3. Put Brianna down for a nap
4. Read my book
5. Listen to music

Things I would do if I were suddenly a Billionaire:
Buy a house...a nice one. Buy a new car. Invest some money in some good stocks. Pay off my student loans and other debts. Buy my parents a house and new cars. Track down Brianna's father and kick him in the pants. Haven't decided if I'd kick him in the front of his pants or the rear yet. Take a few more classes to finish my degree, Buy a professional photography studio set up, and take classes to learn to do it well. Put my sister through school. Make sure that Brianna has everything she needs. Hire a maid. Unlike Jessica, I HATE cleaning, and as long as I don't SEE it being done in a way other than my way, I'm fine. And then I'd have money left over to go on a major shopping spree, after liposuction or something :-P

3 of my bad habits:
1. I clear my throat constantly when I'm nervous
2. I'm a packrat
3. I tend to complain a lot

Jobs I've had:
1. Cashier at a grocery store
2. Stock replenishment at JC Penney's
3. Nanny
4. Nursery attendant/director
5. Volunteer Activities Coordinator
6. Clerk/manager at a convenience store
7. Med Aide/Caregiver at an assisted living facility
8. Caregiver at an Adult Foster Home
9. Dietary Aide at a convalescent facility

5 Things people don't know about me:
1. I still have copies of most of the papers and speeches I wrote in high school, and all of the ones I wrote in college.
2. I've submitted a short story to a literary magazine for publication...it wasn't published, but I did submit it.
3. I LOVE LOVE LOVE music. Almost all kinds.
4. If I know a song, I HAVE to sing along. It's a compulsion. Be it singing along to The Backyardigans, Queen, Eminem, or Garth Brooks.
5. A couple of young Mormon guys just knocked on my door. I sent them away. I get Mormons or Jehovah's Witnesses knocking on my door at least once a year....I'm a Baptist.

Now I have to tag four people of my own.... I think that will be....Claudia, Lisa, Dawn, and Ellen.

March 1, 2008 - Pictures!

2008-03-01T02:46:00.000-08:00

February 29, 2008 - Good News on the Brianna front

2008-02-29T13:51:00.000-08:00

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

2008-02-28T01:39:00.000-08:00

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

2008-02-16T08:35:00.001-08:00

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?

2008-02-13T00:37:00.000-08:00

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:

Finally got rid of my houseguest.
Was in a minor fender bender.
Bought a new camera.
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!

2008-02-03T03:39:00.000-08:00

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.

January 26, 2008 - Better late than never, eh?

2008-01-26T22:52:00.000-08:00

Okay, just to start off, here's a video of Brianna driving in her power wheelchair, providing it works.

Okay, so, this video was taken on Thursday, which is when I originally intended to upload it, but I got a bit distracted in the days since. But here's an update for you all.

Brianna is doing amazingly well in therapy. As if the video isn't proof enough, here's some more. On Tuesday, we had our regular Speech therapy session at Shriner's. Brianna had been in her wheelchair for quite a while, and was getting agitated at being in it and not driving, so we took her out to let her rest. While I was holding her on my lap, we started playing a bit of a game. The ST programmed the step-by-step to give Brianna three options: bounce, wiggle and kisses. Brianna very quickly, consistently and deliberately chose "bounce" several times in a row! She knew what "bounce" meant, and she wanted more!

On Wednesday, we had our regular session with the OT at the rehab center. After Brianna demonstrated her determination to learn to crawl, the therapist was encouraged. She decided to try some quadriped positions with Brianna to help strengthen those muscles she needs to strengthen to be able to crawl. Brianna was holding a ring/rattle toy in her right hand, so she wasn't really using her right hand for support. The therapist decided to try taking the toy out of that hand, to see if she would bear weight on the hand without the toy there. So, the OT popped the toy out of Brianna's hand. Brianna promptly started puckering up. That bottom lip started to jut out and tremble, little tears welling up in her eyes. She wanted the toy back! When I told the OT Brianna was starting to pout, she gave the toy back. Which promptly brought about the usual smiley, happy Brianna.

The next day, we had OT/PT at Shriner's, as well as our clinical visit with the orthopedic pediatrician. Bri's x-rays came back just fine, though he is concerned about the tightening of her Achille's tendon, and mentioned the possiblity of botox (yikes!). Anyway, after our clinical, we went upstairs for our OT/PT session, where I took the video of Brianna driving. She stayed in her chair for 35 minutes, and then we took her out to give her some time in the walkabout. By this time she was starting to get tired; we could all see it. Standing in that gait trainer, she was taking some wonderful steps by herself. But she was really sagging, couldn't hold her head up, just looked like a zombie there. So we decided to take her out and end the session a bit early. As soon as Brianna was out of the walkabout, she started puckering that mouth up, and actually wailing! She wanted more! She was making progress, walking, and then we took her out!

Then, on Friday, Brianna was watching cartoons. It was on Disney Channel, and Charlie and Lola came on. Normally, the tv would've been on Nick Jr. by that time, so I changed the channel, and Yo Gabba Gabba was on. I absolutely detest Yo Gabba Gabba. So I switched it to Noggin, where Wonder Pets (I think) was on. Brianna started crying even harder! So I switched it back to Disney, which didn't make her happy. So then I switched it back to Yo Gabba Gabba, and she promptly stopped crying, and started laughing. I'm telling you, this little girl knows what she wants, and is definitely learning the quickest and most effective ways of expressing that! I'm so proud of my little girl. She's making some amazing strides in all of this, and is growing up so fast! I want another one!

January 20, 2008 - Just updating

2008-01-20T22:57:00.000-08:00

Okay, so Brianna has been on the baclofen for a little over a week now, and we have increased her dosage to 10mg a day, and she seems to be doing well. She's been falling asleep at about 5:30-6:00pm on the living room floor lately, though that is probably because I haven't been putting her down for a nap like I should. Tomorrow, though, we are going over to Mary's, and she'll take a nap over there.

Mary had surgery this past Wednesday, and tomorrow is her first day back to work. She can only sit down for fifteen minutes at a time, then has to stand up and walk around for three to five minutes. Needless to say, she hasn't much felt like doing housework. So tomorrow, I'm going over to vacuum her floors and do whatever else I might bumble across. I also plan to do some baking. I just LOVE Mary's kitchen. I can't resist baking there when I get the opportunity. I'll be making cinnamon scones and blueberry scones.

Anyway, back on track. Brianna had focus group this past Wednesday, too. And it was so awesome! By just giving her something to push off of, the therapist had Brianna actually making progress across the mat! After group, though, we ended up having our IFSP meeting. The entire time I was talking with the therapists and the coordinator, Brianna was squealing and kicking, and twisting around, trying to get ahold of the coordinator's papers, or any pant leg she could get ahold of. She was just so spunky and happy! And in the end, we discussed plans to send Brianna to preschool this upcoming fall. We've pretty much determined that she'll go to a specialized class, rather than a community class. But just to make sure it's the right decision, I'll be going to observe a couple different classrooms to determine which one will be the best fit for her. I'm so excited about it!

January 12, 2008 - She be Trippin!

2008-01-13T00:42:00.000-08:00

Okay, so today was Brianna's first day on Baclofen, and I have to say, she's such a sweet baby, but I couldn't help but laugh! She was so clearly on a drug trip! Her eyes were wide and glassy, as if everything were passing in blurs and she was just trying so hard to capture one image in her field of vision. Going from light to dark, her eyes were wide, as if in wonder. She couldn't stop laughing and squealing and chattering! Sarah felt so awful seeing her on it, and wants to stop giving it to her. But I know she might benefit from it. Even if it does send her on hallucinogenic trips for a while, we have to try it. As long as she isn't unhappy, and as long as it doesn't cause her to back slide as far as progress goes, then I'll keep going with it, for now.

In other news, she's STILL trying to crawl. Poor baby has rubbed a raw spot on her belly, as well as on her knees. It really breaks my heart. With her feeding tube, we have to tape down the extension to keep it from coming out, which means her skin is already sensitive and thin from that. If you add the abrasion caused by the carpet, you've got little bloody welts on her belly, and it's really heart breaking. The good news is, though, Caitlin had a suggestion. We already have to call her Dr. on Monday to talk about having a scan done to see if Brianna's fundoplication came undone. I want to talk to her doctor then about possibly having a mic key button placed instead of the bard she has. According to Caitlin, the mic key is a lot better. She has never had issues with leaking or the extensions coming unplugged. Which is the whole reason we tape Brianna's extension down. If we didn't, even with the long term feed/right angle extension, she comes unplugged. We'll see what the doctor says. But thanks for the tip, Caitlin!

January 11, 2008 - Tone Management Clinic

2008-01-11T23:29:00.000-08:00

Well, today, we had Brianna's appointment at the CDRC tone management clinic. We walked away with an added characteristic to her CP and a prescription for Baclofen.

So here's how our day shaped up. At 6:00am, my alarm went off. I got up, got ready, and decided to snuggle up on the couch until 6:30am. At 6:30am, my alarm went off again. I scooped Brianna out of bed, changed her diaper, and opened the door to find the medical transport waiting. Rode up to Portland, slept on the way. I was exhausted. We arrived in Portland at 8:10 for our 8:45 appointment, and got in a room almost immediately. Brianna was weighed, and had gained about 10 ounces since last weight check. We had about a 15 minute wait before the evaluating physical therapist came into the room to do her exam. Dr. Kao, the attending, was running a little late.

Brianna was in a rather cheery mood, showing off her attempted crawling skills, not fighting against the evaluation, and happily pooping away, dirtying two diapers while we waited for Dr. Kao. When Dr. Kao came in, she asked some questions, conferred with the PT, and we discussed our options regarding Baclofen, determining that it might benefit Brianna. Dr, Kao also made the determination that Brianna is exhibiting signs of dystonia, rather than spasticity, which basically means her basal ganglia is more affected than her cerebral cortex. Which, according to Dr. Kao offers a little more optimism in regards to her abilities to communicate. Which is a really good thing. Communication has been a big concern for me. Will she ever be able to talk? Sign? Any sort of communcation beyond basic scan and select abilities?

Another factor to figure into the whole dystonia issue is the Baclofen issue. According to Dr. Kao, many children with dystonic tendencies tend to benefit from the Baclofen pump, rather than the oral dose. So we'll see how things go. See if Brianna benefits from the oral dose. Of course, we are starting out with a small dose and, if necessary, will continue to increase it, after the first week, until we either notice improvements or side effects (sleepiness). So, basically, that's our day in a nutshell. After the appointment, I was feeling pretty crummy. We came home, I ate, and then I crashed on the couch for a cat nap. I'm feeling a little better now, though a bit exhausted. Hopefully tomorrow is a better day.

January 9, 2008 - Crawling, and finally some progress with the wheelchair

2008-01-09T17:35:00.000-08:00

Well, today we had Focus Group in the morning. It was the first time in about two months that we have seen our PT, Eileen, so it was a good day to go. For the first 2/3 or so of the session, Brianna was the only toddler there. Which means she got lots of special attention, which, of course, she loves. We talked about her progress attempting to crawl, her tone management clinic appointment on Friday, and her manual wheelchair. Eileen and I couldn't decide if we had actually met with the woman who does measurements for a wheelchair or not. She insists we have, that we took Brianna's measurements and talked about what type of chair she will need. However, I have absolutely no recollection of any meetings with a heavy set woman with dark blonde hair :-P.

I would like to think I'm not going crazy at my advanced age of 24 years, but, sadly, it is highly possible. I find that, lately, I have difficultly distinguishing dreams from reality, at times. Ex.: I dream about receiving a letter regarding Brianna's therapy, or an increase in my rent. Both events are commonplace things that have happened in the past. But after a couple days, my memory is so fuzzy that I really can't remember if I really DID receive that letter and just threw it away, or if I dreamed the whole thing. Weird, I know. It makes me wonder if maybe I don't have some memory issues from the knock on the head I received in our car accident. It isn't the first time I've wondered about that. I have difficulty with concentration, memory, focus, and my attention span has shrunk to virtually nonexistent at times.

Anyway, back on track here...whether or not we have had a meeting about Brianna's wheelchair or not, we wouldn't begin applying to insurance for it until next month anyway, for two reasons. First of all, we can't start applying for her wheelchair until 3 months before her 3rd birthday. Secondly, since we are going up to the tone management clinic, that might have an effect on the type of wheelchair she needs. We are hoping to get some sort of baclofen, either in an oral dose or in a pump (an oral dose would be my preference) for her, which would drastically change her tone, and in turn, change the type of wheelchair she would need. Oh, I can't wait to get this started! Let's get the ball rolling!

January 7, 2008 - Sweet Baby Girl

2008-01-07T22:37:00.000-08:00

Okay, so, another blog about Brianna trying to crawl. It's simply amazing to see! She must've spent at least two hours today playing around, trying to learn to crawl, squirming around on the floor! And she has so much fun doing it! The transformation she has undergone since beginning more extensive therapy through Salem Rehab and Shriner's is amazing. She's trying to learn to crawl, she's learning to steer a power wheelchair, and she's simply amazing! I really never thought I could love someone so much.

On another note, today was a bit of a rough day for me, being a single mommy. So, I posted about it on the Single Mom's board. I didn't expect to get much of a response to my post, but the support was overwhelming! I even found out that one of the other mommies on the board has a son who is tube fed. It is so reassuring to know that there are other moms out there who, while they don't necessarily know firsthand what Brianna and I go through, are able to commiserate and offer such support. I was absolutely touched by the responses I received, to the point of tears. I truly have been blessed to have found such a loving and supportive online network. The mommies from the single parents board, the babies with cerebral palsy board, and the May 2005 board, particularly the Chatty Mommas, are all amazing. I know many of you are reading this now, and kudos to all of you for being such wonderful blessings in our lives. Thank you so much for being there for us!

January 6, 2008 - Video of Brianna Crawling

2008-01-06T22:41:00.001-08:00

Okay, here's a video of Brianna trying to crawl! I couldn't resist. I had a stroke of genius and decided to use my video feature on my camera for a change. Then, I started fiddling with some software on my computer, figured out how to loop the footage, brighten it, and add music! Yay! Here you go!

January 6, 2008 - Brianna tries to crawl!

2008-01-06T16:57:00.001-08:00

Okay, I finally took some pictures of Brianna trying to crawl! It's so cute seeing her! I wish I had a video camera, so I could catch her grunts and squeals and all on video, but that will have to come at a later date. Anyway, here are pics! Please excuse the mess, and the dirty carpets. I'm in the process of taking down Christmas decorations, and really need to vacuum and shampoo the carpets...darned fake trees aren't supposed to shed!

January 4, 2008 - Frustrations

2008-01-04T21:20:00.000-08:00

Okay, so I think Brianna's fundoplication is coming undone. Yesterday, we had an appointment with the ENT up at Doernbecher's, where they stuck the mini camera down her nose to check her breathing passages. Everything came back normal, thankfully. But after the doctor removed the scope, she started gagging and actually puking! She has never puked since the surgery, even when she has retched so hard she foams at the mouth! Then, again today, she started retching, and actually puked, again! And I know it's puke, not just mucus, because you can smell the stomach acid in it. Poor baby! I really hope we don't have to have surgery again to fix this, but if she is throwing up, I don't see much of a choice in the matter. The Reglan just isn't doing anything. We were out of it for the past couple days, and I noticed neither an increase nor a decrease in the number of retching episodes she had between her last dose the other day and her dose tonight, when they finally filled her prescription. Heck, I'm beginning to think the prevacid or the prilosec or the zantac, either of the three, was doing more for her than the Reglan seems to be. It's just so frustrating!

January 2, 2008 - Baby's Christmas

2008-01-02T23:45:00.000-08:00

Here it is, the second day of the new year, and I haven't updated my blog since December 14th. I think it's about time, isn't it?

Brianna and I had a wonderful Christmas. It was really nice to have my sister here for the holidays for a change. And it was almost as nice to be able to do a significant amount of cooking and baking for a change. The last couple of Christmases with Bob and Mary, I've felt so useless when it comes to Christmas dinner. I was allowed to bake cookies or make a fruit salad, but never much else. I think, as much as I love her, it's because Mary is a bit of a control freak. But this year, she had to work on Christmas Eve. So I was able to do some of the cooking. Not much. Just the green bean casserole. But I also got to bake the pumpkin pies. It was a small step, but it felt so good to feel useful for a change! As if I were contributing, not just hanging on the edges. I hate feeling like I'm on the edge of everything, looking through the glass, observing everyone else doing things.

Anyway, for Christmas, Brianna got some great toys, some jammies, a Vsmile Baby, a Fisher Price Drop and Roar Dinosaur, and a couple of other VTech toys. Damien bought the dinosaur, and I was so proud of him for it! It's a great toy, one that I had wanted for Brianna. It will help so much in the coming months for developing her sense of cause and effect, her fine motor skills of grasping and reaching, and even her ability to sit up. Damien, I know you're reading this. You did a great job. You always do a great job with Brianna, whether it's taking care of her, or buying her gifts. You're a great daddy, and I'm proud of you. We are both very fortunate to have you in our lives.

Well...I guess I had better go for now. I have to be up early to shower and get ready to head up to Portland for another round of appointments. Hope you all had a Merry Christmas, and I hope your New Year has gotten off to a great start!

December 14, 2007 - Thoughts about my little girl

2007-12-14T03:15:00.000-08:00

Recent events and conversations have spurred me to blog about my baby girl. Not about the progress she is making, though that is awesome. (We tried doing the two switch thing in therapy on Tuesday and, while she didn't tolerate therapy as long, she was grasping the concept!) But about my little girl. She is such a treasure to me. Every smile puts a little bit of sunshine in my heart. Every laugh or squeal or kick of her feet makes me so proud of her, because not too long ago, there were no laughs or squeals or kicks.

There are days when it's so hard. When I get so tired of making all the decisions on my own, when I just want someone to cuddle up with at the end of the night. Someone to talk about my day with, who understands how hard it can be at times. I've been asked many times, though, if, given the chance, I would try to change things and make them work with Sean. And my answer is always, without a thought or a doubt, no. I have the best part of him now, I don't need anything more from him. Were it up to me, I would never hear from or see him again. Never have to worry about him demanding visitation with Brianna, or fighting the child support agreement. Honestly, that is my biggest fear. Now that the courts are establishing child support, once he starts paying, he'll be within his rights as her father to demand visitation.

I don't know, I'm really starting to ramble now, aren't I, Damien? I told you I tend to do that in my blogs.

It's funny, though. A while ago, Brianna woke up fussing, and I had Sarah go upstairs and pick her up and bring her down to get her diaper changed. After she changed her diaper, Sarah was cuddling Brianna. And I got so jealous I wanted to cry. I never in my entire life imagined I would feel love as intensely or as desperately as I do for my baby girl. She is my world. I live for every smile, every snort. Of course there are things about parenting I dislike. Cranky days and dirty diapers are chief among them. But if I were given a choice between tolerating the cranky days to get the good days, and not having her, I'd always take the cranky days. She makes my life worthwhile. I don't know how to describe it. It's really beyond words. She's beyond everything I ever imagined a child could be. And every smile, every sound, every inch of progress makes me immeasurably proud of her.

December 8, 2007 - Christmas Time is Here Again

2007-12-09T01:00:00.000-08:00

Okay, just wanted to jot out a quick little note about Brianna and how well she is doing, and post our Christmas pics.

Brianna is doing very well. Last Thursday, we got her new AFOs readusted. Adam typically makes the AFOs with two pieces, a hard inner shell that wraps around the front of the foot, then the outer shell that wraps around the back. But Brianna's heels weren't sitting back in the outer shell the way they should have. So we had Adam cut the inner shell to where all that is left of it is a piece shaped kinda like a Pringle's potato chip. Well, a little bit more to it than that. It's hard to explain. Anyway, we had him reshape it, and reconfigure the velcro straps so that they buckle differently, and now the AFOs work wonderfully.

We also got a TLSO soft vest made for Brianna. It's not to correct scoliosis, as they normally are. This one is strictly for use in positioning her in her stander, her wheelchair, her walkabout, or other positioning equipment. We tried it on Friday in her wheelchair for the first time, and it's amazing the difference having that vest makes in her ability to control her movements! Granted, she didn't tolerate her therapy as long, but that could've been just as much due to exhaustion as anything. She's been rather fussy the past few days, so I think she might be teething again.

Anyway, other than that, not a whole lot is going on. My sister, Sarah, moved back up here to stay with us. I don't know if I posted in earlier blogs about her staying here with us watching Brianna, or not, but she had been here, but went back to California, so that she could get a job and a place of her own. Well, winter weather set in before she was able to put her plans into action, and there is no way anyone would've been comfortable with her driving that 50 mile stretch of river highway in the winter months. Plus my brothers were starting to get on her nerves. So she asked if she could come back up here, and I told her yes. Now she is going to work at Sunnyside, where I was working, hopefully, and we'll get a three bedroom house or apartment, as soon as we can save enough money for it. I'm anxious. I want that bigger place. Anyway, that's all for now. Here are our Christmas Pics.

November 15, 2007 - Pictures!

2007-11-15T17:52:00.000-08:00

Okay, so we had therapy again today. And I got pics! I'll write more later, but I wanted to post the pics of her in the wheelchair.

November 12, 2007 - The Little Stinker!

2007-11-12T23:27:00.000-08:00

Brianna is such a little stinker! Yesterday, we went to church with Mary. When we got back, I was completely exhausted! I put Brianna down on the floor to watch her cartoons, and I stretched out on the couch with my book, biding my time till dinner. Suddenly, I hear this shriek! Brianna was playing on the floor, as happy as could be. But it appeared she had the tubing from her feeding pump wrapped around her throat! I started panicking! What a horrible mom to be so absorbed in my book as to not notice this! So I slid down on the floor, untangled her, and twisted her around again. It wasn't wrapped around her throat, thankfully, but the little stinker thought it was funny! Then, five minutes later, she did it again! The little bugger has certainly learned how to get into trouble! I actually had to MOVE two of my wicker baskets from beneath the coffee table, to get them away from her. And there's no keeping her toys tucked in a neat little corner. She does her darndest to get into that corner and sling them all over the place. But she takes such joy in it, kicking and shrieking as she does, I can't be angry with her. Oh, the joys of being a mother.

On the sad side, though, I saw our first picture of Brianna the toddler. I know, I know, you're wondering what the heck I'm talking about, she's been a toddler for a while. But on Saturday when we saw Mary, she took some pics of me and Brianna. And she got them developed. When I looked at them on Sunday, one of them in particular struck me. Brianna looked so much like a little girl! Till then, I had stubbornly refused to view her as anything but a baby. But when faced with such incontrovertible proof of her growth, I felt my heart break just a tiny bit. Just hours before, sitting in church service, I had been thinking to myself, "I'm so lucky. While other children Brianna's age are growing up, sticking their fingers in light sockets, tearing into things, running in the road, I get to keep my baby longer." Then, I see this picture, and it's like Fate or God or someone is slapping me in the face saying, "Ha ha, I don't think so! You can't keep her little forever."

To make matters worse, this song has been haunting me! You might know it. It's called "In My Arms", by Plumb. The first verse goes like this:

Your baby blues
So full of wonder
Your curly cues
Your contagious smile
And as I watch
You start to grow up
All I can do
Is hold you tight

Can you imagine the emotional turmoil I have been experiencing having these thoughts, with this song playing backdrop to them? I feel like I'm becoming a raving lunatic! Why does she have to grow up? Why can't she stay my baby girl forever?

November 10, 2007 - Drama, Drama, Drama

2007-11-10T19:10:00.000-08:00

Man, you'd think I'd get a break from the drama, wouldn't you? But nooo...never! Here are the latest developments in our lives:

Brianna continues to do well in therapy, learning more about using her head to control the wheelchair, and taking more steps in the walkabout. She is learning to make choices between objects or activities in speech therapy, either using visual contact - look at the object, look at the person holding it, then look at the object again, or by using a step-by-step switch to scan through a selection of items, then turning away to select it. The speech pathologist says she thinks Brianna is making a conscious decision about 70% of the time, which is really good.

In other news, I had to give notice at work. See, Brianna's weekend nanny, the girl who seemed so wonderful, that I was raving about to everyone, turned out to have a few issues. I won't delve into those issues, being as they are rather personal to her, but suffice it to say, they are rather disturbing to me, and I no longer felt safe leaving my daughter in her care. I don't seem to be able to find and keep good childcare for Brianna for the weekends. The daycare provider, whom I was so hesitant about, has turned out to be quite wonderful, and is actually holding a spot for Brianna until January, when I intend to go back to school. But in the meantime, between now and January 7th, when I begin classes again (hopefully), I am not working, I am staying home, working with Brianna, hopefully trying to get things organized and maybe use some of her Title V money to buy a step-by-step, a few jelly bean switches, and some adaptable toys for her, in addition to, possibly, some other things.

Giving notice at work really wasn't as horrible as one might think. For one, I had already planned to give notice in December so that I could go back to school. I had my previous coursework evaluated, and with it, I can complete the two year Speech Language Pathology Assisting program in one year. Hopefully. Or two years, at part time. Not sure yet. But it's quite fortunate, because out of 45 general education credits, I have achieved, according to the transcript evaluation, 44. Just need to take another PE class, maybe another science class, and I'll be fine.

Admittedly, between now and the time I graduate, money will be tight, and my stress level is going to skyrocket. But I have realized two things in relation to my life and my future. First of all, if I ever want to make anything of my life beyond what can be made of one working a minimum wage job washing dishes, then I have to finish my schooling. I can't just let 3 years of education and $30,000 worth of college loans add up to nothing. Secondly, if I want to keep my sanity about me, there is no way I can juggle school, work and Brianna's therapy schedule. So I cut out the one that we can most do without. Brianna HAS to have her therapy, there's no compromising there. And I HAVE to finish my education in order for us to ever have a life independent of the state. And so, I have to suck up my pride and go down to DHS yet again to apply for aid, yet again, so that I can finish school and forge a new path.

Is there any doubt in your minds now that I'm going nuts? If you still doubt it, read my latest entry in my other blog. Maybe then you'll believe me when I tell you I'm about a hair's breadth away from sitting in a corner, drooling, babbling and rocking.

October 22, 2007 - Doubts

2007-10-23T01:00:00.000-07:00

I'm not so sure I like Brianna's daycare provider. She seems nice enough and all. But when I went to pick her up this evening, I was about half an hour early. It was 9:45pm, and Brianna was still up. Usually when I go to pick her up, she's in bed. Then again, usually when I go to pick her up, it's closer to 10:30pm. So was tonight just a fluke? Or does the daycare lady only put her to bed a little before I get there? I'm going to give her the benefit of the doubt and assume that she tried to put Brianna down, but she screamed bloody murder. Brianna does that at times, especially when she has had a really good nap during the day, and is not ready for bed yet.

Really, I don't know how much longer I'm going to need the daycare provider. I'm going back to school in December, so I will need someone to watch Brianna while I'm in class, but I really don't know if I'm going to be working until then. I'm THINKING I'll keep working till December 1st. But the daycare is going to be closed from Nov 19 through Thanksgiving weekend. So I won't be able to work during that week, which really might end up causing issues. Then again, if I don't qualify for the apartment subsidy, after nagging my boss to fill out the paperwork so that I can get it, I will have to quit working anyway. There's no telling when another subsidy might open up, and I really need it before I start my classes, because I won't be working while I'm going to school. Argh! So frustrating! Heck, I just need a man! Someone to take care of me, and help me through these hard times.

October 18, 2007 - Amazing Day!

2007-10-19T01:04:00.000-07:00

Oh my goodness, todays therapy session was amazing! It was our first session with her new PT at Shriner's, and we got there about an hour early, so we got to get about half an hour of extra therapy. Since she hadn't yet met Brianna, the PT wanted to do her own mini-evaluation and give her own opinions about Brianna's prognosis and what our goals should be. After doing the mini-eval, we tried Brianna in two pieces of equipment: a walkabout and a power chair. She did so well in both! She lasted for about half an hour in each one, and was quite happy! Though she couldn't really go too far in the walkabout, since I didn't bring her shoes to go over her braces (I'll remember to do that next time), she was getting the concept, and was trying to take steps. She was doing wonderfully with head control, too! So amazing! And then...we tried the powerchair! Brianna was using her head to control it, tooling up and down those halls like it was second nature! The PT said she's seen ten year olds who don't grasp it so quickly! I didn't know whether I wanted more to laugh or to cry, it was so amazing! So the PT is going to go ahead and request funding for a walkabout for Brianna, from Wheels to Walk. That should take about three or four months. And they're going to put her on a "needs" list for funding for a power chair through Title V and another resource they have. Meanwhile, the wheelchair vender is going to keep an eye out for a used wheelchair base for her, so that we can cut the cost in half and hopefully get funding quicker that way. In the meantime, EI is supposed to be working on getting a manual wheelchair, a tilt and something, for her to use once she starts going to school. I swear, this has been a great week for therapy!

September 23, 2007 - Road Trip!

2007-09-23T22:29:00.000-07:00

Okay, so I just got a comment from Jessica, who chewed me out for not updating and not posting on the BBC board lately. So, here's a long overdue update.

In July, Brianna and I had our first long roadtrip! We had previously driven about 3 1/2 hours north, to visit some friends in WA, but this time, we headed south...six hours south, to visit my family in California. Long trip, but Brianna did so well! She fussed once in a while, but we made a pit stop in Myrtle Creek, OR, about halfway there, to visit my brother, Gordon. We bought him lunch, and then headed South again. We had such a great time visiting! We stayed for 5 days, during which time we experienced the warm sulfur springs (Brianna loved them!), a forest fire that started the next day at the aforementioned springs, a serious thunder storm, sweltering heat, bank overdrafts, and a seriously shortchanged direct deposit paycheck. We had a blast, but, when all was said and done, it was good to be home.

When we came back from Cali, we also had a passenger, my sister, Sarah. She came back with us, intending to get a job, and spend time taking care of Brianna. She was here until Sept 14th, when she went back to Cali, having decided to go back to school. It was nice to have her here, but, again, it was good to have my home back. Now, I find myself facing lonely days filled with work, therapy appointments, errands, and nothing more than a book for company (Brianna being the exception to this).

On the therapy note, though, we have wonderful news! Brianna has finally begun PT/OT/ST at Shriner's! She is going once a week to all three, which means two appointments, two hour-long (one way) drives to Shriner's, and one day less of work each week! That could be a good thing, or a bad thing. Because, though I'll have three days off each week for therapy, I will be at therapy all three days each week, which makes for a really long week with absolutely no me-time. Joy, oh, joy. As if I'm not insane enough as it is!

So, to add to all this, here are some more-recent pics of Brianna and me. Enjoy!

Brianna and her aunt Sarah and her aunt Mouse

Brianna smiling

Brianna and mommy

Brianna, mommy and Aunt Sarah Me

June 28th, 2007 - Zoo Pics!

2007-06-29T01:19:00.000-07:00

Okay, so, Jessica has requested zoo pics. Unfortunately, I didn't get any pics of Brianna, and only one of Evan and Kara. But I do have some other pics of Brianna to post as well. Let's see what I can come up with.

Beavers "grooming" each other

This black bear kept pacing back and forth in front of the window

Evan and Kara

Elephants

Tiger...we almost missed him...we passed by while the trainer was putting down ice for him, and went to the restroom. When we came out of the restroom, the tiger was out.

Over Memorial Day weekend, we went with Bob, Mary and Damien up to Bob and Mary's cabin in the mountains, to celebrate Memorial Day as well as Brianna's second birthday. We had a great time. These are some pictures from the weekend.

Smiling at Damien's silly antics

Enjoying her new bubble maker, from Mary's lap.

Going home.

June 26, 2007 (for Jessica!)

2007-06-27T00:51:00.001-07:00

Okay, so, since Jessica scolded me for not updating, here's the newest update.

Since I've recently started working (the day after Memorial Day was my interview, and I started work the next week, if I remember correctly), things have been really hectic. Fortunately, we have a wonderful daycare provider who is very flexible and doesn't get too exasperated by my scatterbrained last-minute needs, or my late arrivals. She and her daughters absolutely love Brianna, and I am very happy with the arrangement.

So the latest news is, we started Brianna on her feeding pump around the clock. She ran out of Prevacid and it took a while for the doctor to authorize a refill. So she was out for a few days. Because I didn't want her to suffer from the lack, I decided to give the around-the-clock pumping a try. The doctors have been urging it, because it will help get more formula into her, but I was hesitant because she is such a squirmy little thing, I was afraid she'd pull it out. She has done excellently! We just tape down the tube securely, prop up the pump beside her in its little backpack, and let her play! If she's doing therapy or anything, of course she comes unplugged. But for the most part, she stays hooked up to it. Sue, the DCP, is okay with the pump, though she won't put her down for a nap while she is hooked up to it. She would be entirely too worried if she did, so I told her, if she isn't comfortable with it, then that's fine. But I am very anxious to see if Brianna has made any significant weight gains since we started her on the pump full time.

Oh, we went to the zoo on Sunday, as well. It was a lot of fun. We went with a friend (maybe someday more?), Evan, and his ten year old daughter, Kara, and we had a blast. Kara absolutely loves Brianna. Who doesn't? She was very curious, and asked a lot of questions about her condition, about her tube, and all sorts of stuff. She's such a smart girl! She definitely made the trip more enjoyable! I hope to get to spend some time with them again soon. I can honestly say, Evan is the type of guy I am looking for. He isn't needy. He is steady, honest, and loving. And he is a Christian, which is awesome. He doesn't have any illegal habits, or any legal addictions, either, unless you count that triple shot espresso he HAS to have in the morning :-P. Oh, and did I mention that he is a Vin Diesel look-alike? Oh, baby, that in itself is enough to make your heart skip a beat! But add in the facts of his personality and his utter devotion to his family, and you've got one amazing guy. Let's just say I REALLY hope I get to see more of him in the future :-D. And I didn't mean that in the LITERAL sense, you nasties!

June 2, 2007 - Saturday Market

2007-06-02T16:05:00.000-07:00

Today marked our first trip to the Saturday Market! And, of course, Mommy, the big dummy, forgot the stroller!

Okay, so here's how our day has shaped up so far. Brianna woke up at about 10am, at teh same time her feeding pump alarm started going off, my cell phone bleeped at me to tell me I had a text message, and I started hearing doors slamming next door through my open bedroom window. Eh, no big deal. Brianna had a very poopy diaper, but she had a great big grin on her face, so she KNEW what Mommy thought of that.

We sat around and relaxed for about an hour, then I took my shower, got us both dressed and all that, and went for a drive. One of Mary's friends, who helped organize a Military Moms' group here in Salem, which is throwing an All-Military Ball soon, was having a yard sale to raise funds for the packages the group sends out. This is a woman who is absolutely in LOVE with Brianna! The first time she laid eyes on Brianna, she wanted to babysit her! I thought she was joking at first, but she's serious! She's anxious to get to babysit! So, anyway, I showed up to the yard sale, which was pretty slow by this time (it was about 1pm, and really hot outside). So Cynthia kept telling me to load anything I wanted into the back of my car. She told me she'd rather give it to me than have it go to Goodwill after the sale ends tomorrow. So, I got a cute storage basket, a lamp set, a small trash can for my desk, two stuffed dolls for Brianna, and two matching Carry on suitcases. Cynthia held Brianna while I perused the sales items.

After loading up the car with all these treats, I thought about dropping them off at home first. But it was already 1:30, and the Saturday Market closed at 3, so I wanted to get there first. Got there, didn't even think about needing a stroller until we were parking. So, I ended up packing Brianna around, squirming, arching, head butting and causing mischief the entire hour. But we got to see lots of stuff. I really wanted to buy some plants, but I knew I couldn't carry a hanging basket and Brianna at the same time. So I settled for two small bouquets of mixed flowers...tiger lilies, greenerie and some wildflowers. Beautiful flowers. Made my day.

So now, we're home, after I stopped at Carl's Junior's for a burger (Darned radio ads for the new Teriyaki burger did me in). I'm trying to get hold of Damien, so that he can take Brianna for the night tonight. I have a few errands yet to run, and then I'd like to go to church this evening.

Anyway, before I forget, I ran into one of my former Lit. professors and his wife, who works in the registrar's office, while we were there. Stood and chatted with them for a few minutes. Bonnie was really sweet, and remembered me talking about Brianna when I came in a couple weeks ago to request a copy of my transcripts. She asked some questions about Brianna and the prognoses for her walking or talking. It was nice to get to chat. Dr. Hills is one of the professors I most admired and enjoyed learning from at the school.

May 28, 2007 - The beginning

2007-05-29T00:28:00.000-07:00

I decided to start a blog about the everyday ups and downs of being a single mom to a developmentally disabled child. I know there are other parents out there like me, who really want to find someone who can relate to their situations. Here I am. I'm here to tell you about my own experiences with insurance, finding good childcare, trying to find a good, flexible job, juggling doctors appointments and therapy schedules, AND trying to find time to fit a little romance into it all. Let me tell you, it isn't easy. My romantic life since the dissolution of my last relationship last September has been virtually non-existent. And it gets lonely. Throughout my blog, you'll probably be reading a lot about my own emotions, and how lonely it gets being a single mom. I've always been particularly vulnerable to softer emotions, and firmly believe that I was not created to be alone. I am the type of person who thrives as part of a couple. Anyway, I'm going to end my first blog here, as Brianna is fighting sleep, and I really need to pick her up and cuddle her for a few minutes. Enjoy the blog, and I hope you find it entertaining, at least!