Saturday, October 27, 2007

31 for 21: What to say

I have encountered plenty of people who ask "How old is she?" when Braska and I are out together here and there. They always guess her age about 5 months younger than she is, but that's ok, since that's what size she is. I have said several times that I can imagine it will bother me a bit more, although still not a huge deal, when she turns one next month and I see their reaction to that, as she still is in her car seat/carrier when we're in a restaurant or in a store since she doesn't sit up.

Today, I met some friends for brunch. The waitress was a nice enough, very young girl, and she started cooing at Braska right away. That's nice. I don't mind, Braska likes the attention, and I'm proud of my cutie. The waitress asked her age, and I told her 11 months. She then said, "But she's not walking yet?" as she noticed that she was up to the table in her car seat/carrier. I just agreed and said, "Not yet." She said she had a 14-month-old and told me how soon I'd be running after her. "Mine was walking by then," she said, referring to Braska's age. I just smiled and took a drink, trying to politely end that part of the conversation, hoping that one of my friends with me would say something about food or that she would walk away to let us look at the menu. She paused a moment, then finally said she'd be back in a minute.

I told my friends then that I never know what to say, and that's the truth. I almost feel like I want to defend Braska or it's not her fault that she doesn't sit yet. But I also don't want to be just constantly blurting out that she has DS for no real reason. So I guess it's something I'll get used to. It's better now that her feeding tube is under her shirt instead of in her nose... that helps cut down on comments and questions, but still. Maybe I'll sit down and plan out some possible statement that I can kind of keep in mind. That's how I am. I like to be ready for situations. Then again, maybe I'll just go with it.

I don't mind telling her "story." So it's not that, I just wish I new what the right time was to say this or that.

Friday, October 26, 2007

Mommy life: A big evening!

Braska's been holding out on her therapists. In the therapy sessions, they try and try to get her to reach for things, but she's completely uninterested in any of the zillions of toys that have been presented. She just recently, like in the last few days, has been starting to reach for my hands when I go to pick her up, and that's been fun for us. She doesn't really reach up, like she's asking to be picked up, she reaches out to hold the hands, but only if I put them palms facing I'm miming a window between us. I say "hands" and she giggles and reaches up to grab my hands. She's done it for her Pop too, and that was good times.

She has also been extremely interested in her tubing while it's hooked up for her bolus feeds to the G-tube. She spends the entire feeding--granted, it only takes about 3 minutes (perk of the situation)-- reaching and following the tubing around when I move it to add more formula or to try to evade her grasp. She's been showing great attention and focus for extended periods compared to just a couple weeks ago.

Tonight, she really went crazy though. Pop was relaxing on the couch with some Sudoku and Braska came for a visit. She took an instant liking to that little paperback book and spent the next 25 MINUTES grabbing, shaking, giggling, kicking, and generally getting a crazy good workout while loving every second. This is a record by far for activity, focus on one object, strength in her grip on something not very easy to hold, and plain old fun. Here's a couple snippets that were about 15 minutes into the fun time... she'd slowed down just a tad and was relying more on her feet.

Every time we'd take it away, thinking she was done, she'd reach out and grab it again. This was right as she was heading to bed, and she was pretty tired, but it didn't stop her from being super jazzed about this book. When she finally did finish, I filled her little belly and off to bed she went. She was out like a light...even more than her normal instantly-to-sleep pattern. Both of us watched her playing with big looks of amazement. It was great to see. I wish I'd have caught more at the beginning. Even though she looked like she was finished at the end of the second video, she went on for another 6 or 7 minutes. She almost seemed obsessed! We're going to test it out again tomorrow to see if the same item is as interesting.

Saturday, October 13, 2007

Mommy life: Blog suggestion box

Alright, it's time to come out from the blog lurking shadows. I know there are hundreds of you checking in on us every week, and that's GREAT! But I'd like to know what you'd like to hear about or see in pictures. Are you interested in therapies, doctor visits, and progress? Are you into Braska's social calendar? Would you like to know more about the feeding process and the tube transition? Do you prefer the "normal life" kind of stuff? Would you like to know any specific things about Down syndrome, heart defects, or feeding issues?

Come on, take the plunge....leave me a comment with what you'd like to see or what your favorite part of Braska's little blog is. You're taking the time to come by to see us...we'd like to make it worth your while!

31 for 21: Day off?

Saturday for some people means a day off. I used to get days off, and they were great since I worked alot and had fairly stressful responsibilities. Almost three years ago, I began my own business so that I could be home and work less, hoping to enjoy a bit of life outside of work for a while. In a matter of a few months, things had grown out of control to include an increasing number of clients and a few employees (independent contractors actually, but it's shorter to say employees).

This business requries that I'm on call 24/7 and available to be at a client's office within a few minutes if necessary, so that quickly made days off a thing of the past. Although the work schedule is somewhat flexible ordinarily, we generally work 7 days a week, at least a little each day, to keep caught up. And at any time, a client may call and need work done right then, no matter when it is. Someday I'll elaborate on how that affected me immediately after Braska's birth...someday soon maybe.

Anyway, the other piece of the puzzle is that when I do have a "day off" of any kind, I view that as a chance to get caught up on household tasks. Unfortunately, I am the only one who holds this view in my family. So you can see how any day off is not so much a day off.

Today, a Saturday when I was actually caught up with work-work, ended up being pretty busy. Between feedings and diaper changes, there were a couple trips to feed and let out a friend's dog, some good thorough kitchen cleaning, errand to the library, and mostly the hours spent on the pool...again. I have officially spent more time trying to get this thing closed than I was in it all summer. That's so sad to me... I love my pool, but it's lost a bit of it's luster in the past couple summers. It was fun to see Braska play a couple times, but that's about all that we got to enjoy it. But today was little enjoying and mostly working. An hour or so of skimming and such, some master chemical work to prepare for winter, on hands and knees scrubbing the waterline all the way around, laying out waterbags, and arranging the winter cover. Here's what it looked like mid way through.

I did get a quick hand with filling waterbags tonight after M got home from a full day of overtime. Tomorrow I hope to get things done with the final vacuuming, winter fixture changes, disconnecting the pump and filter, and getting everything stored away.

So I wouldn't consider this a day off, but at least I got some things accomplished. Come to think of it, I haven't had a day off in almost 11 months, but I guess that's life. I'm about ready for one though...maybe I'll work on that.

Wednesday, October 10, 2007

31 for 21: The first straw

Today brought a visit from Louise, our speech/feeding therapist. She started working on teaching Braska to drink with a straw. The initial signs are good; she forms her lips around the straw really well, so Louise said we're off to a good start. There's no sucking, of course, but we've got an action plan. She also gave some encouragement regarding Braska's eating and speech habits already that show strength in her jaw and control of her mouth that will bode very well for us as we move forward. I feel like there was more to it that I was going to report, but now it's left my mind. But it was good...I'll just hang with that.

Tuesday, October 9, 2007

31 for 21: The whole dang jar!

Feeding issues aren't something every kid with DS encounters, but it's not really uncommon. It IS more rare that they have the issues and aversions as severe as Braska and for as long. I think she is just too much her father's daughter. He still has severe food aversions at 33. I'm so jealous of people that can plan their meals ahead of time, even a few hours ahead, and especially if they can fix just one meal.... I don't really remember what that's like. I typically get Braska's dinner, then fix something for M, and then decide what I'll eat. But that's another story for another day...

Braska typically eats solids, AKA baby food from baby food jars, twice a day. She's much improved from what she was about a month ago in both the quantity she'll eat at a sitting and the rate of speed for the feeding, which I'm very thankful for. It used to take her about 45 minutes to get down maybe half of a level 1 jar. (That's a little over an ounce.) She just plain took her time, looked around between bites, mashed the food around in her mouth for quite a while, and eventually would turn back toward me and stick her tongue out. (That's her sign for more, she doesn't really open her mouth.) Lately, she's been doing much better, taking between 2.5 to 3 ounces in about 15 or 20 minutes. I've been pleased with that, for sure.

This morning, she was not in the mood. She took maybe 2 bites, under coercion, and was just not interested. So that was that. So this evening, I thought I'd see if she was more in the mood. She generally does her best eating in the evening for some reason, anywhere between 7:30 and 8:30 pm. In our situation, I don't ask questions...we just feed her when she wants to eat; aside from her regular tube feedings, of course. And tonight she was more in the mood. I opened a new 4-ounce jar of Apples & Squash, spooned some out to another jar so I could add the oat cereal. (She eats that in everything, as she doesn't care for thin, runny things.) She ate that batch, then I went back for a second batch, then I just took the original jar, oat cereal added there too, and she finished the jar! Yep, she ate 4 ounces of Apples & Squash with about 3-4 tbsp oat cereal added. And all that was in about 15 minutes. She was in a great rhythm and maintained her interest pretty well. I hope we can make this a habit. It's the second time in about a week, but this one was better. So let's keep up the progress!

Now, if we could just convince her that liquids are fun too!

Saturday, October 6, 2007

31 for 21: Thanks Karen K

Last night while we were at the concert, good friend Karen K came over to stay with Braska. She has two cuties herself, Maddy and Grace, but they got to spend the evening with their dad. Braska's had a bit of Must-be-with-Mommy-itis lately, so I was hoping that this wouldn't be one of those nights for her.

We've left Braska with friends before, but we typically arrange not to be gone over a feeding time. But this time we couldn't quite work that out. So Karen came over early enough to listen to my run-through of the important info.

~If you want to try to feed her orally, here's the food, already thickened.
~Be sure to use this particular spoon.
~She won't open her mouth, but she sticks her tongue way out when she wants more.
~You have to have a spoonful of food ready and within sight for her to tell you she wants more. If it's not there, she seems to assume there's no more to be had.
~Push down slightly on her tongue and then into the mouth. She'll close her lips, then pull the spoon straight out.
~Don't use the upper lip or gum to scrape the spoon, coming out upward. Must come straight out.

~For milk feeding, here's the syringe and extension tube.
~Make sure to have a washcloth underneath the end of the g-tube when you open it. Stuff comes out.
~Prime the extension tube first to avoid air in the belly. (Demonstration given.)
~Hold the syringe of fluid just a few inches over her belly, as the higher it is, the faster it goes. Sometimes too fast can upset things.
~If it starts to slow completely or she starts to cough up little bits of milk, you're done, and she's full.
~Otherwise, she can take all 6 ounces.
~When finished, again make sure the washcloth is under. Backflow will happen.
~Rinse the syringe, extension tube, and bottle right away to avoid clogging.
~Try to burp, but don't be surprised if it doesn't work.

They played and laughed and played. Braska ate marvelous for her oral feed and had no issue with her tube feed, and she went to bed like a champ, as always. Karen reported a good evening all around and even got in some peace and quiet with some always-important Seinfeld. God bless you, Karen. Much appreciated!