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

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!)

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!

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"

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!

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....

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!

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?