Wednesday, October 31, 2007
My long-lost buddy Mary sent me a link to an interesting article.
Treadmill training helps Down syndrome babies walk earlier
CHICAGO (AFP) - Treadmills can help infants with Down syndrome learn how to walk months earlier than traditional therapies, a new study has found.
Parents of 30 babies with Down syndrome were asked to help their children walk on the treadmills for eight minutes a day, five days a week. They sat on a bench which straddled the machine and held their babies as the treadmill belt encouraged them to take steps.
This exercise helped the babies learn to walk up to four or five months earlier than traditional physical therapy alone, the study found.
More intensive training helped the babies to walk even sooner, the study found. The intensity of the training for half the babies was increased gradually after the infant could take 10, 20, and 30 steps per minute. The speed of the treadmill was increased, as was the length of training. Some children were also given light weights on their ankles.
Children with Down syndrome generally don't learn to walk until 24-28 months, about a year after children without developmental disabilities. Getting them walking sooner can help improve their social skills, motor skills, perception and spatial cognition, said study author Dale Ulrich of the University of Michigan's Division of Kinesiology.
"The key is if we can get them to walk earlier and better then they can explore their environment earlier and when you start to explore, you learn about the world around you," Ulrich said. "Walking is a critical factor in development in every other domain."
Down syndrome occurs in about one out of every 700 births.
Ulrich said he hopes hospitals and support organizations will rent the treadmills -- which cost about 1,200 dollars -- to parents of children with Down syndrome. The study was published in the October issue of journal of the American Physical Therapy Association.
I think this is pretty cool, and we have a treadmill, so I might have to be starting the introduction to it so she's not afraid of it.
Tuesday, October 30, 2007
This clip is so encouraging to me.
I can't wait til Braska tells me silly knock-knock jokes. That will be some fun day!
Monday, October 29, 2007
Check back for pics from the FunFest at church on Wednesday night.
(We're not even telling her Pop what she's going to be...it's a surprise!)
Sunday, October 28, 2007
And who stole the show? Yep, that would be the tiny one. She seems to do that. I don't think Brent minded at all, as he's not a limelight kind of guy. And Braska had a peachy time watching her Pop play and banging on a very colorful table. It was a nice little party.
Saturday, October 27, 2007
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 something...like 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
Thursday, October 25, 2007
The continuing saga...
I didn't know a whole lot about the testing that is "normally" done during pregnancy. They gave me a folder full of all kinds of brochures at my first appointment. I read everything, but it didn't really mean alot to me. My husband and I talked extremely briefly about it and determined that we'd do the blood work stuff and, of course, ultrasounds, but nothing more invasive than that. I'm a chicken when it comes to needles and such, so the blood work was more than invasive enough for me.
Due largely to unrelated emotional stress during pregnancy, I lost quite a bit of weight in the first trimester. These issues combined to cause the dr to want to keep a close watch on the baby's size, so I had several ultrasounds early on. I also wasn't really eating--even though I didn't have morning sickness like many, I felt icky all the time--so there was also concern for the nutritional elements. All this meant that I had plenty of appointments.
I had some labs done at the end of April, and the result of the glucose caused the dr to want a 3-hour GTT (glucose tolerance test). That's about the worst thing that you can throw at me...to not be able to eat for 12 hours and then have to be stuck 4 times in 3 hours for blood draws. Well, I made it through, even with a couple extra sticks since they can't ever seem to get me on a first stick. A couple months later, it was time for another blood draw, and since they were going in anyway, I ok'd them to do the quad screen at the same time. I can't tell you all the dates things happened exactly, which is surprising to me as I realize it. Dates are generally my thing. It was in the middle of June sometime, though. I had the labs drawn on Monday, and they said they'd just give me the results the following visit, in one month...unless there was a problem. By this time, I'd already had 3 ultrasounds, all of which were perfect, with great views of the heart, no abnormal nuchal translucency measurement, and no reason to think anything was up. A couple days later, I got a call. The nurse told me that I had an elevated risk for Down syndrome, and she said I needed to come in a few days later for another ultrasound and an amnio if I wanted it. I told her I didn't want the amnio, for sure. A needle that huge, there's no way. As soon as I hung up the phone, I crumbled. I didn't need this! I was already living in the most painful time of my life, and now this?!
I was numb. A part of my reasoning for not planning to have kids was a real fear of ending up with a "not normal" child. It was a real issue for me...I just always had this feeling that I would be the one, out of everyone I know, to have a kid with problems that required more attention, more work, etc. It wasn't that I didn't realize the selfishness involved in that mindset, it was more like I just acknowledged the reality that I chose to avoid that possibility.
It's no big secret that I didn't have emotional support at home. There was no big discussion about what I would do. I was pretty much on my own, but I knew the amnio was out. I returned for the follow-up ultrasound, again everything looked fine. I talked to several friends who had recently had AFP's come back with elevated risk and had perfectly fine babies. They all knew several people who had the same. I even sent all my info to be reviewed by a maternal fetal medicine specialist (the perks of having half my family involved in medicine) who said he didn't seen any reason to be worried. I put it out of my mind. I wrote it off. Never bothered to deal with it further. I did pray for a healthy child and that she wouldn't have any of these issues, but that's it.
Here's the part that I wish I could tweak: I never once searched for info about babies with DS. I'm on the computer all day every day for work, and I spend alot of time researching everything. I'm a Google addict...don't know? Just Google it! I don't know if it was because I was so preoccupied with the other stressors that I was dealing with or if it was a kind of subconscious denial, but I never once even did a basic search. Had I done that, I think I would have saved myself alot of grief later. Had I seen that they are just kids, they walk and play like "regular" kids, I wouldn't have been so devastated when she was born. But that's for the next part of the story...
Wednesday, October 24, 2007
This pictures are from 2/15/2003. This is Mindy, Tim, Justin, Julie, me, and M.
It was a crazy snowy night in town, and NO ONE was out except the snow plows. But since our small group from church all lived within blocks of each other, we thought it was a good night to hang out and play games. One couple couldn't come, and I'm guessing it was because Brad was out plowing, since that's what he does when it snows. The other three couples of us got together at Justin and Julie's house. I remember that there was alot of laughing, and I remember there were some surprising answers to some questions, but I don't remember specifics. It was a great night though.
This was back when there were no kids for any of us. Tim and Justin were grad students, the rest of us worked "normal" jobs. We had evenings free and spent most of them together, rotating houses, but always hanging out at least a few times a week. It was a time I didn't cherish enough, I didn't realize how enchanted that time was. I rarely wish I could go back to a place in time... but there are a few. And this is one of them. Life was so good then, so worry-free, just a bunch of newlyweds enjoying learning about life together.
Now we're the only ones left in this picture. J and J are in Missouri and have 2 beautiful daughters and a third on the way. T and M have one and one coming too, living in Belgium. I truly believe that life would be different today if only J and J had stayed. But that's silly...it doesn't work that way. We miss them. They were our anchors to reality and to what was important. We still talk to them frequently, but not enough. It'll never be the same, but I'm so thankful we had that time with the whole gang. What I wouldn't give to be that happy and innocent again...
Tuesday, October 23, 2007
I don't know yet about her status of medical issues or not, but we're praying she is healthy and thrives so that she may go home soon. I am just so glad she's here, and her parents get to see and hold their beautiful child. God, bless them with strength. Thank you for letting them choose life for her.
Monday, October 22, 2007
Saturday, we worked on the rocks...and there was a TON of them. They had to be moved by hand. Yeah, that's right. Bending over and scooping up handfuls of big, jagged rocks. We had no idea how much was actually in there! Then the guys worked on them yesterday, most all afternoon. And they got it done! I can't believe how fast they got through it. This is what we ended up with.
The fabric stuff got put down and the mulch started going in.
So all the plants are in, and now the mulch is in.
Here's some before-and-after shots.
I know... it looks a bit stark and plain, but give it time! I like it alot, and I'm so excited to see it all fill in. The photos don't do it justice, I must say.
Here's an overhead view.
Now, for the next project on the increase-home-value list...windows and siding. Not this week though...
Sunday, October 21, 2007
On March 31, 2006, I woke up early and took a pregnancy test. I had planned to do this the night before. I had been experiencing some symptoms and was headed to the dr, but I didn't want to look ridiculous and uninformed, so I thought this was a way for me to rule it out, to tell them that I'd already checked and this wasn't the problem. So you can imagine my surprise...
Yep, I took a second one to be sure.
It was about 6 am, and I woke my husband to tell him. He looked at the tests and said, "Hmmm. Look at that." And he went back to bed. No magic in that moment really.
We decided not to tell anyone until we got to tell the family, and since they live away and not in the same place as each other, we tried to figure out how to accomplish telling them all at once. We didn't want anyone to hear before anyone else. So we managed to arrange a get-together at my brother's and sister's house the day before Easter. My family was all there, and my in-laws came with us for the cookout. My brothers-in-law were on the west coast, so they couldn't make it.
We had a nice little dinner and such, then we pulled out a special gift we'd made for each of them. I'd colored Easter eggs for each person there with their "new" name on them...Auntie Rachel, Uncle Ryan, Grandma Carole, etc.
We had them in little individual baskets, so we brought them in, while eyes were closed, then everyone opened and looked at their gift. They all said thanks and thought it was cute, although they weren't so enthused. Grandma C made the statement that it was cruel to give them such a thing from Belle, our dog. We told her it wasn't from Belle. She didn't get it, and no one else did either. Then we waited a few seconds and said it again..."It's not from Belle." Everyone just looked confused and weird. Then we said it in unison once again..."It's not from Belle!" And it sunk in suddenly. All chaos, screaming, clapping and such erupted. M caught a quick pic of the grandmothers in their shock.
Then the phone calls commenced as Grandma C called all relatives and friends to share her good news. My sister Joy announced to us behind happy tears that she'd been praying for this to happen, to which we responded that we wished she'd have shared that with us so we could have been more "careful."
Grandma C proceeded to share the news too. And M shared in his own way, the only issue there being that I didn't know it had been "shared" until the phone calls started pouring in.
All in all, it was a pretty neat event.
Saturday, October 20, 2007
This just reminds me that even educated people, people who care and never intend to offend, if they have not had direct contact with DS, shouldn't be expected to say all the right things.
You've come a long way baby! I'm just trying to keep up.
(5 minutes old and 11 months old)
Friday, October 19, 2007
Just a few, then I'm headed to bed early... These are at the top of my list right now.
~I love my car. I am thankful for having the means to drive something I love so much. I spent many years driving whatever was available, some of them hand-me-downs, and they served well for their time. But I am so thankful that I finally have something I picked out and still really love to get into every time, even 2 years later.
~My daughter is so darn easy! I often say that for being so high maintenance, she's super easy to deal with. She's always happy, content to play on her own for a long time, and she loves to giggle and smile generously. Nothing better.
~I'm thankful for my husband's job and the health insurance it provides. Braska's total bills are well over $300,000 at this time, and I can't fathom trying to do that without insurance, or even without good coverage.
~Having no real work schedule is a marvelous thing! Granted, I may be called on at any time of the day to do something immediately, fixing a system or providing immediate turnaround for a client, but the flexibility of working from home and not having set required hours is such a blessing. I don't think I could ever go back to a "normal" job again. I hope I never have to try. And who lives in comfy clothes and PJs? That would be me...and Braska.
~I'm grateful for friends who aren't afraid to do the tough stuff. Friendship isn't always about the pretty times, and I am so impressed by those who have stepped up and been true friends, not worried about how it looks or how out of their comfort zone they are. You guys rock! "Good friends are willing to intrude."--TobyMac
~And finally, for now... I love my bed. It is so darn comfy, huge, and just makes everything better after a day of stress.
So I'm off...God grant me quickness to sleep and peace of thought through the night.
Thursday, October 18, 2007
I started the day with this little peach.
Wednesday, October 17, 2007
**Let me say before anyone should misunderstand...Braska is not part of this. She is in no way an unhappy part of life. This has nothing to do with her or Down syndrome or health issues...those are manageable. The sad things began when she was only a wiggly dot on an ultrasound. I just want to be clear. This is not about her.**
It's not that there aren't good things to remember...there are lots of them. Unfortunately, though, my memory isn't picky about what it clings to, and it holds on to unhappy along with the happy. And sometimes the happiness of the happy memories makes the hurt of the unhappy even more torturous. Looking back can then become painful even when the event remembered was so very happy at the time. My therapist (yup I see one regularly, never fear) encourages me to journal through these memories--good and bad, but I'll spare you that fun.
So for this birthday, I thought I'd find some old pics of some good birthdays past.
This is from 2003, my 30th birthday. My small group came and dressed up the back window on our car for me before I left for work that morning. Then my parents and three of five siblings came by to say hello that day too. They were on their way to or from home in Missouri. It was pretty funny to see how many honks I got that day...
This is from 2005. For a few years, maybe 3 or 4, we got together on my birthday to carve pumpkins with Mindy and Tim, Cory and Mary. It was pretty impressive what these guys could come up with. Now Cory and Mary are in Oregon and Tim and Mindy are in Belgium. We miss you guys.
I've blocked out alot of the last two years, and I guess some of that must be last year's birthday, because I can't remember a stitch about it. My mind was most definitely elsewhere at the time, and a part of that was preparing for Braska's arrival. Little did we know how life would be once again changed in 5 weeks.
The good things about this past year are all Braska-related. She's the best birthday present ever, even if she came in the wrong month. This morning she has smiled and laughed and babbled about whatever is in her little happy mind. That's what I look forward to for birthdays to come...
Here's what I wish for my birthday today... consider this your gift to me.
~I wish that those of you who have spouses who love you faithfully and support you completely pause today and realize you are blessed.
~I wish that those of you who have children who make you smile and brighten your day no matter how difficult they may sometimes be hug them today and thank God that he gave them to you.
~I wish that those of you who have endured trials this year and can look back to see how far you've come can hold onto that for the next trial that will inevitably show up.
Make today a great day, wherever you are!
Tuesday, October 16, 2007
Queen of Columbus
COLUMBUS - Jordan Wiggs is the perfect homecoming queen: She's a social butterfly everyone knows and likes. She is spunky, petite and pretty.
Some might say it would take a special environment for Jordan to be voted homecoming queen at Columbus High School.
She was born with Down syndrome, in which an extra chromosome is copied into a fetus' cells and causes developmental delays. (rest of story)
The backstory--We bought this house almost 4 years ago, and originally, I thought the landscaping was nice, especially the lawn lights, which were a big fave of mine from the first visit. And it was nice then. BUT we don't do lawns. We don't do trimming, we don't do maintenance on landscaping. We actually looked into synthetic grass. Nope, not kidding. That's how much we don't do lawns.
So these hedges in front of the house have grown out of hand. I think we've trimmed them maybe twice since we've lived here, but neither time was all that complete or well done. For the most part, I haven't minded it, except that our next-door neighbor has an immaculate lawn and spends hours a week caring for it. I've really particularly hated the bush on the end, next to the driveway. It's like a pine bush or something weird, but it just looked way out of place to me and infringed upon precious driveway space. So I've been wanting to get that thing out of there for ages, but since I knew no one in this house was up to the task of removing it, and I always have more important jobs for the parents when they come to work, I figured it would be around forever. Then lately I've been thinking maybe I'd just have someone come out to do the work for us, get a quote to see if it's reasonable to do an overhaul of the front yard. I've been thinking alot about resale, although we have no immediate plans, it seems to be a back-of-the-mind constant. The neighbor who takes such great care of his lawn has a son who works for a landscaping company here in town, so I chatted with him about it one evening. In less than a week, we'd developed a plan, he'd offered to do the work, along with his dad (retired, hence the lawn), and had an agreement. I get a great deal on the plants since they're extras at the landscaping company, and the guys are giving me a huge break on the labor, so we're in business for a very reasonable amount.
Sunday evening, LD, the son, was in the front yard tearing things out while we were in the back working on the pool and stuff. Then the dad/neighbor, N, was here on Monday--ALL DAY--taking the hedges out and trimming trees in the back as well. Package deal, I guess. He had help from LC, other son (lives right behind us), and A, LC's son.
Here's the yard last weekend, before.
Here's stage 2, with partial demo complete.
Here's stage 3, almost done with demo. I kind of like the little mushroom tree.
Last night they were pulling out stumps for quite a while...and N has been here all day so far working on the rest of the hedge stumps.
Here's one of the trees in the back that got a trim. It used to touch the ground. I didn't understand that this was to be the end result, but I can see the benefit...except that the grass will now grow under there and need to be mowed!
Monday, October 15, 2007
So this is where I sit.
This is what I see in front of me. Note football on TV, baby on the floor, and dog on the chair arm. Very typical.
Here's my mobile office...laptop and PDA phone.
Sunday, October 14, 2007
It was amazing! We got the pool almost completely finished, only halted by a piece I have to buy tomorrow at the pool store. They cleaned the gutters, raked the back yard, deflated the inflatables, trimmed a bunch of old brush from a long fenceline, and cleaned up afterward.
The kids were great and pitched in working too. They also enjoyed a little fun time, which was entertaining to see. We have a very large tree next to the pool on one end, and it starts very low to the ground. I never even thought about it like a climbing tree, but JJ was practically peeking out of the top!
Here's the view inside the tree.
We chilled out and had pizza for dinner before everyone went home to hit the hay. It was a great way to spend the afternoon.
I simply cannot express how much this helps us, in a tangible sense and intangibly. This saves me dozens of hours of work, and it would probably have never all been done, in truth. But it speaks volumes of the hearts of these friends and the way they live their belief outwardly that people matter. Thank you Jim, Sue, JJ, John, Jacob, Josiah, Johannah, Jillian, Marc, Ann, Ben, Matthias, and Kaylee! We are so blessed. Thank you, God, for these servants of yours who have willingly obeyed your call.
Saturday, October 13, 2007
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.
Friday, October 12, 2007
Four things about me that you may or may not have known, in no particular order.
Four jobs I have had in my life:
1. Wendy’s, Madisonville, KY
2. Special ed teacher, Salem, MO
3. Patient accounts supervisor, Urbana, IL
4. Practice Manager, St. Joseph, IL
Four movies I have watched more than once:
1. What About Bob
2. The Matrix
3. Runaway Bride
Four places I have lived:
1. Irving, TX
2. Hot Springs, AR
3. St. Louis, MO
4. Wayne City, IL
Four TV Shows That I Watch: ( I watch all of Dulcy’s plus these….)
(Since you didn't see Dulcy's... it was The Office, Scrubs, Everybody Loves Raymond, and King of Queens.)
1. CSI (Vegas and Miami)
2. House Hunters
3. Iron Chef America
4. Pushing Daisies
Four places I have been (for fun - not work - ha!):
1. Singapore (well, kind of for work and fun)
2. Montana (does visiting family count?)
3. Austin, TX (also family, but fun too)
4. I don’t have a 4th…no honeymoon, never had family vacations, husband hates to travel…sad, I know.
Four of my favorite foods:
3. Homemade chicken pot pie
4. Anything sweet
Four people who email me regularly: (This was supposed to be individual names, but I couldn't get that specific.)
1. My clients
Four places I would rather be right now:
1. Anywhere in the parallel universe that’s 2 years behind this one.
3. (Can’t think of two more…that pretty much covers that.)
Four friends who I think will respond:
(I didn't really fill this in since I only sent it back to those who sent to me.)
Four things I am looking forward to this year:
1. Braska turning 1
2. New landscaping next week
3. (Can't think of anything else...again, sad.)
Thursday, October 11, 2007
Here's some little things that have come up recently in conversations about blogs and internet in general, so I thought it might be helpful to share the info. Many of you will be in the "been there, done that" category, but maybe there will be something new. I really appreciate that many of you are not big "internet junkies" like some of us, so the fact that you check in with us regularly makes me feel very special!
~When you see a highlighted word of phrase, like this, it's called a "link" and means that you can click on that word or phrase and it will take you to another web page or another place in the current blog or page. This is very helpful in avoiding alot of retyping and copying what others have written. Don't be afraid of a link!
~In Blogger (blogs that have "blogspot" in the address), the pictures used in a post can be clicked on in order to see them a bit bigger and more clearly. So anytime you can't quite see something as big as you'd like, just click on the picture.
~For those of you that have a bunch of blogs, or even a few, that you check frequently, I highly recommend Google Reader. And especially as a part of iGoogle. Google Reader is a feed reader that you can set up to tell you when your favorite blogs, news sites, and other internet pages update, post new items, etc. This saves you from having to keep checking blogs to see if they've posted new things. iGoogle is great for a home page for your internet browser, and it can incorporate the weather for your area, a to-do list, jokes for the day, news info, and a host of other possibilities customized by you specifically. Both can be used with your Google/Blogger account, and they're super easy to set up. If you don't have a Google account, sign up for one! It's quick and gets you access to lots of neat places. Here's a screen shot of my home page, Google Reader is on the left side, and you can see that Michelle at Big Blueberry Eyes has put up a new post.
I'm not a paid endorser, but the functionality of these tools is great. If you have questions about getting it set up, send me an email. It's in my profile.
~If you click on the title of any given post in Blogger, and most other blogging formats, it will show you the post as well as the comments that have already been posted. Just another way to see the post.
~Bloggers love comments, and they don't have to be anything especially clever or witty. It's just a way for us to see who's checking us out and have some feedback of what others are thinking. I've learned a whole lot from the comments made here and on others' blogs...tons, really. So when you read a new post, take a minute and let the author know what you're thinking. In Blogger, just click on the link for comments at the bottom of the post, type in your comment, then click on "other" and put in whatever name you'd like to use in the "name" box. You don't need to put in an email or web address. If you have a Google account, then you have the option to use that as well. Then just click "Publish your comment." It's like an online hug! Send a comment!
Wednesday, October 10, 2007
Tuesday, October 9, 2007
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!
Monday, October 8, 2007
Since it was a mini-holiday, as they call it at the bank where my husband works, he got the day off. He was on call, so there were some things to attend to, but for the most part, it was a work-free day. That's nice, since he had worked both Saturday and Sunday. It was a fairly non-eventful day of nothingness for me too. I got nothing done. I accomplished nothing. What did I cook? Nothing. What did I clean? Nothing. Well, I guess I did get some work-work done. (That's the kind I get paid for.) That's something.
I didn't feel great for most of the afternoon, but that's all the excuse I have for wasting an entire day. Some members of my family consider this a good thing and the makings of a great day, but it makes me feel like total yuck. Let's see if I can pull it together tomorrow. Here's hoping!
Saturday, October 6, 2007
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!
Tonight I went to a Steven Curtis Chapman concert with Bethany Dillon and Sanctus Real at the University of Illinois Assembly Hall. This is probably my 5th SCC concert in 16 years. He's my favorite all-time artist. It was an early birthday present from my husband. I knew every word of every song by SCC except for the ones from the album being released in a couple weeks. That makes it fun...when you can sing along and reminisce. He always does a montage/medley of his most popular songs and it's probably my favorite... I could listen to him go through all of his 45 #1 songs. Bethany and Sanctus Real were also quite good. I knew several of their songs as well, though some I didn't realize were theirs until the song began. I recommending browsing through the music clips on their sites... lots of good stuff.
I thought it was especially cool that his 16-year-old son Will Franklin and his 18-year-old son Caleb Steven were in his band, playing the drums and guitar respectively. I recognized them immediately when the lights came up. It did make me feel a little old, though, since I remember at my first SCC concert back in college 16 years ago that Will Franklin was only a few months old... wow. Time flies.
At our 2nd wedding reception (we had 3), there was a DJ and dancing, and we had a live band for the beginning as well. It was the super-cool praise band from our church, and they did one of our fave SCC songs at the time, Dive. So that song has a bit of nostalgia for me... here's a very poor video clip from last night taken via my Motorola Q. Little bit of crowd participation time...
If you're not familiar with Steven Curtis, check out this link for lots of free listens. Maybe I'll do a top 10 list soon of my faves, but that would be awfully hard.
Thursday, October 4, 2007
6 weeks earlier
I was housesitting for some friends who were out of town, and they had the internet. In their house! That was a rare thing back in late 1997 in small town Missouri...hard to believe, isn't it? Anyway, I had never really been online, even all the way through college as we didn't have it on campus. They showed me how to turn on the modem, connect with the right phone number, and I thought the crazy noise it made as it was connecting was just funny. Zhhhhhhhhh, bedong, bedong. So I connected one night, clicked on something that said Search, and just started throwing words in there to see what would happen. Then I remembered some people talking of chat rooms, so I thought I'd try that. But I was a bit scared of what I'd find, as I'd heard the horror stories (?) so I typed in "Christian chat room" thinking that would surely be a safer option. There was a return on the search of several things, but I just randomly chose one.
I came to this chat room that I can't any longer remember the name of, except I keep thinking there was an Eric involved or something. There was a place to put in a name and an email, which I didn't have, but it was optional. I called myself Wish, as that was what the last four numbers of my phone number spelled. I can't remember why I knew that.... So in I went. It took me a bit to read over the little buttons and such to figure out what to do, but it was set up where you would type a statement, question, response, whatever and click on Post, I think. Then the page would reload and you'd see what everyone else had done since it last loaded. When I logged on, it automatically put up a post that said "Wish has entered the room." Then to see if anyone responded, you had to click Reload. Reload. Reload. There was alot of that. And with the old dial-up, you can imagine how speedy this was not.
To the left of the page it listed who was in there. There were maybe 10 or 12 as I remember, and they all seemed to know each other by the way they were talking. They must come here often, I thought. As for the screen names, there was South, Muncher, Isa4031, Mrs.M, and I think a Cherokee or something like that. Over the next few moments, some of them said hello and welcome and such. I returned the conversation, one at a time, answering questions about where I was, male or female, age, whatever I wanted to share. I remember little about what they said, except for Muncher... he told me he was 41, from Montana, with 3 kids. I said, "Nice to meet you," and that was it. I didn't stay too long that night, but it was interesting.
Over the next few weeks, I would pop in there occasionally, when I'd go by the little public library to see if their one internet-capable computer was available. One of my students at the high school had hooked me up with a Hotmail account, and I thought I was cutting edge. In that time somewhere, my dad had upgraded to having the internet at his office at the church, so I would go by there after I got off work at 11 pm to check my email and see who was in the room. (I was teaching school during the day and working at an after-hours medical clinic in the evening.) I began to get to know South a little, Mrs. M was there some, and I liked Isa4031. I saw Muncher in there a few times, but we didn't talk really. He and South were kind of like the funny, cute guys that teased the girls...it was obvious they were well-liked.
The last week of September, I was spending more time in this chat room. It was fun to see people talk to each other about nothing, or sometimes they'd have a particular topic that was being discussed. One night, there was a guy named John who was kind of being a cyber bully in the room, demanding that all of us in there agree with his view on something Bible- or God-related, although I don't remember what it was. I was always up for a theological discussion or debate back then, so I had engaged him and was eventually caught in an impossible spot as he was irrational. Muncher was in there at the time and sent me a private note, called a whisper, to see if I wanted to go to a private room to escape, which I didn't know about really. He told me how to do it, and off we went. Everyone had done the same to various rooms and left John to yell at himself, basically.
We talked the cyber small talk for a bit. He introduced himself again as from Montana, but when I asked about the kids, he came clean about that little fib. Apparently, the females would come in, think he was witty, and then pester him or something. So he started warding them off with this fib about a family. And he was 23, same as me. And he was a PK (preacher's kid) like me. We talked for about an hour or so that night, posting and reloading like crazy. He told me of how he had a job where he sat in front of a computer the whole time just chatting between the rare customer interruption...and I thought that was cool. It didn't seem like alot of important things were said, but now to look back it's interesting. In that first conversation, I learned that he planned to name his daughter Nebraska, that he thought/knew that a man can truly believe that his wife is the most beautiful woman on the planet, no matter what she looks like to others (this one was a big deal to me), and that he was very careful not to mix chatting online with romance due to old mistakes. Those are three things that would come to be life-changing in more than one way. That night I also told him that he was never to show up on my doorstep without calling first...as a joke, since he didn't know where I lived. It was nice conversation, and we said goodbye. Simple enough.
The next night I went back to the church after work and logged on. There he was, Muncher was in the room again. We started talking right away, all in a group, as I was getting to know "the gang" who were the regulars. Then we ended up off by ourselves to talk again, posting and reloading for the next 4 hours. (Yeah, I got off work at 11 pm remember...) He was charming, very smart, really funny, and quite engaging. We talked about tons of stuff: work, family, world things, stupid people, and the problems with churches. We eventually said we had to go and logged off. The third night, we chatted for a couple hours, and he started asking for my phone number. I was SO not going to give it to him. He could be a psycho! I hadn't told him what city I was in, only the state of Missouri. I wasn't going to give him my phone number...he might be able to get my address from directory assistance! I debated giving him the church number, but decided against that too. But I did kind of want to talk to him...it was exciting and scary. I refused to give him the number, so he gave me his and begged me to call. I told him I didn't think I could do that, and thought it was time to go home. He kept asking where the midpoint was between Montana and Missouri so we could meet up. Is he crazy?? I'm not meeting up with this guy, even though I like to talk to him... that's just nuts. I said I'd talk to him later and logged off. I went home and just sat there... I had the number in my hands, but I couldn't do it. I got ready for bed and just sprawled out on my bed in the dark, eyes wide open, debating in my head if I'd do it.
Finally, I gave in. I had to dial probably 4 times to get all the way through. Then it was ringing, just once and there was a voice. I knew he lived alone, so it had to be him. I paused just one second and said quietly, "I think it's in South Dakota somewhere...the midpoint." He laughed and I could feel the smile from ear to ear through the phone. We talked that night for about 2 hours and finally went to bed.
The fourth and fifth days in this saga were full of emails, as I had shared my email address and vice versa. I managed to get to a computer to check them a few times through the day, and there was at least one every time, usually closer to 8 or 9. In the evenings, we'd chat for just a bit while I was checking email, but then we'd talk on the phone for close to 4 hours each of those nights. He kept telling me I was causing him to break his rule...the internet/romance one. At the end of day 5, he kept saying we "just had to" meet. He got so adamant that I got mad and quickly ended the conversation. I wasn't ready for that...On day 4, I'd mailed him a picture of me with some friends, snail mail style, and he had sent me one on email. On day 6, he received the picture and called me right away. I hadn't told him which one I was, but somehow he knew immediately, and he was right. That night, we talked again, although not for long. He said he hadn't meant to be so forward about meeting, but he just felt like he had to meet me, even if I sent him right back to Montana. I said he was crazy and left it at that. He told me he was not feeling very good, so he better get off the phone.
The next day, day 7, I sent him emails to see how he was feeling. He didn't respond. I tried to call him at home and he didn't answer. I tried to call him at work, and his boss said he'd requested a few days off. I started to get nervous, but thought it was nuts...he was in Montana for Heaven's sake. He must just have been really sick. That evening, after not hearing from him all day, I logged into the room to see if he was there, but he wasn't. Mrs. M posted a hello to me, and then asked, "Is your company there yet?" I practically fainted as I realized what she meant. She knew he was on his way, and I was terrified. I logged off immediately, and called my little sister to meet me at my house. How had he figured out where I lived? I was careful not to give my address. Maybe I'd mentioned the town, but I couldn't remember. I thought I had described what car I drove, which was unique in that my music academy logo was on my back window for all to see....so I couldn't be in it. My sister and I put my car in my garage and went to look around town in her car. I knew what he drove, he'd told me, and his name was on his license plate, so we could spot him. It was like a very covert operation, and I was panicked!
We drove around for a few hours, not knowing when he'd left Montana or how long it would take. We returned to my house to see if he'd called. There was no message. Soon after, though, he called. He was in Columbia and was calling to fulfill the not-showing-up-at-my-doorstep-without-calling requirement. He was so proud of himself, all giddy and happy and anxious to see me. I was livid. I chewed him out and would have cussed him out if I'd have used such language. I told him he was not coming to my town and that he'd better just forget that. He was about two hours away, and it was already about 11:30 pm. After some charming and my calming down, I agreed to meet him the next morning in Rolla, the town close by. He said if I would only let him see me in person and if he could touch my cheek, he'd go right back to Montana a happy man even if I wouldn't let him stay or didn't want to see him further. I caved. I gave him directions to the Drury Inn, called the hotel to pay for the room since he didn't have any money (yeah...I scratch my head still too. I don't even pretend this was rational.), and went to bed. We planned to meet at 10 am the next morning, Saturday, October 4, 1997.
I woke up, debated forever about what to wear, got ready to go, and headed out. He was supposed to be waiting in the room, and I'd ask at the front desk which one...since my name was on it anyway. I got to the hotel parking lot at about 9:55 am, thinking I would compose myself, straighten my clothes and double check my make-up before going in. But as I drove into the lot, there he was. Leaning on the back of his car in the parking lot, waiting so blatantly eager that he almost appeared to burst and instantly retract when he saw me. I parked two spots away, even though there was no car between us, just to give myself a bit of space. I got out, took a couple steps, said hello, and he did the same. We hugged and then just looked at each other. He just kept smiling so big. We have since shared, of course, what we first thought... he thought I had too much make-up and jewelry and I thought he looked nothing like his picture at all.
We kind of stumbled around with small talk for a moment, then I asked if he'd like to get some breakfast. He said he'd do whatever I wanted, and I needed something to help keep us busy, so we went just across the way to Denny's. As we ate and talked, he took great joy in making me uncomfortable, just smiling and sitting kind of close, obviously proud of himself. Then it was time to decide if I was going to let him stay or send him back... I guess you probably know how that decision went. He followed me back to town, first to my house where we just talked and hung out for a while, then we went to my parents' house to meet them and the kids. (My parents knew I was meeting him and thought I was nuts, for good reason.)
I don't remember much about what happened the rest of the day til that night. I do remember that while we drove about town here and there, he delighted in "making the car small," as we still call it...leaning on the console kind of close, bumping in to me as I shifted gears, etc. Seems so silly and cutsie. Then we were back at my house, and I was preparing to take some things over to my parents' house to stay while he stayed at my house for the night. We talked about what a wild day it had been, how we couldn't believe he'd actually driven the 28 hours uninvited just to see me. Then as I started out the door, there was the kiss.... and the "I love you." (Two days later as he was heading back, there was the first proposal too, which I declined...a big weekend.)
***Three years of dating long distance, although only 3 hours instead of 28, then this... the rest of the story will have to follow later.***
Yep... it was a big day...a really big day. 10 years ago today.
Wednesday, October 3, 2007
So for today, instead of just talking about how behind I am, I'll simply touch on something that I've been thinking about alot lately.... ready?
The whole stuff about "DS kids" versus "kids with DS" doesn't bother me. Now hold on...I'm not saying I don't understand why it does bother some, it simply doesn't bother me. I can only speak for myself, though my husband agrees, that it makes me no difference the order in which the words are placed in the sentence. So if someone is telling me about "another little DS girl" that they know, I don't take offense. I admit that I notice it every time, mostly because I know it is such a hot topic among the DS community. (Hmmmm...honestly, I don't know if I'm supposed to say the "community of those who have a loved one with Down syndrome"...but I'm tired.) In my mind, it's the same as when someone talks about their "gifted children."
I will say that if people are being particularly derogatory, I'll speak up...but I find that most just simply haven't heard of the "people-first" philosophy. They talk of blue-eyed girls, preemie babies, and at-risk students, so it follows, without malice, that they would continue the same. I don't know...I can't really break it down like it's in my head, but I can just say it's not a big deal to me. I have plenty on my list of Things That Annoy Me to No End, but this just isn't one of them. I'll try to be careful to respect the feelings of those who are sensitive to it, absolutely... I just thought I'd say my 2 cents.
Later edit: Please understand...In the interest of the whole attempt at Down Syndrome Awareness for October, I bring this up as an eye-opener for some and a statement of fact of my own perspective. I make a point to use the order which does not offend, respecting the fact that many are bothered by it. I sometimes forget, but I try. And I think that for those of us who are just learning or are not bothered by it, we should be that respectful. But I also want to let those know who do get prickly each time they hear it said "wrong" that it's not necessarily an insult or attempt to demean your child. Just food for thought... not a world mandate.
Tuesday, October 2, 2007
One example of it, as stated by Miss Judy, is how she controls her bouncy seat. She can kick like a crazy girl and make noise, but when she wants to just do some rocking, her motion changes to this... deliberate and very well controlled. It shows that she understands how her movement affects the desired outcome...cause and effect...good thing.
She also got high marks for anticipating things, reacting clearly to different people, and a quality list of consonant sounds.
Monday, October 1, 2007
1. I'm the oldest of 6 kids, the youngest being 22 years younger than me. She turned 5 on my wedding day. Our ages now (at the end of this year) 34, 31, 27, 18, 16, 12.
2. At one time, before I was married, I gave private voice and piano lessons, worked with community choirs, and taught music theory.
3. I met my husband online before it was popular to do so. (Story forthcoming, hopefully.)
4. I got married when I was 27.
5. I currently live in Illinois, and this is the 3rd time in my life I've lived in this state.
6. I swore that I would not have toys all over "the good living room" when I was planning for life after delivery.
7. I owe about a zillion apologies to all the friends who already had kids before me. I can't believe I thought I'd get along so smoothly. You were all right...about everything.
8. My brother (31) is a veterinarian who just got married on Saturday. My sister (27) is a big-wig in hospital administration and got her MBA at 22.
9. I desperately need to mow my lawn, close the pool, tear out the hedges in the front yard, and call for estimates on siding. But I just sit here.
10. My daughter has Down syndrome. Her name is Nebraska Larae (Braska Bear). My husband picked her name. She is 7 months status post AV canal repair. Wow. (Stories forthcoming, hopefully)
11. I like ice cream...too much.
12. My favorite color is deep purple.
13. I had to have two epidurals during labor. (Again, hopefully the story will be along soon.)
14. Braska is currently watching Love and Learning Kit 1 video. I can never get the little bits of music out of my head.
15. I was once a part of the coolest small group ever, made up of 4 couples (later 6) who all lived within a 1 mile block and didn't have any kids... those were some good times. Really good times.
16. I spent a month in Singapore in 1995. I'd love to go back. It's absolutely beautiful.
17. In college, I was known by the nickname Sprite, because it was said that I acted like the silly, carefree girls in the Sprite commercials. Life of the party, that was me. Where did that girl go?
18. I didn't go to the Buddy Walk in our town this year, even though Chris Burke was there. I just didn't know what to do or if anyone would be there that I knew, so I chickened out.
19. I love home improvement projects....when I have the time to do a good job. I could watch HGTV for far too many hours a day.
20. I could read the newspaper when I was 4. I was always the youngest kid in my grade.
21. I need to go clean the kitchen, and Love and Learning is over. So that's all for now...