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

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

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!

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

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

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

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

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!

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

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

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!