Wednesday, December 10, 2008
Let me back up for the sake of those who are newer to this fun of acronyms. IFSP is the individualized family service plan that is initially done with a kid enters the EI (Early Intervention) system, normally soon after birth for kids with special needs. Every 6 months, or when a change needs to be made sooner (OR when you change states), it is reviewed and updated. This goes on from birth to the 3rd birthday. In our experience, it has included the service coordinator--who keeps everything in line and organized regarding all our services/therapies needed, the various therapists and service providers, and the parent(s). We basically walk through the various therapy categories relating to the goals that we set 6 months ago, discussing how she has done, what goals she's met, what she needs to work on now, and then specifying what goals to set for this next period.
We moved to Missouri right after Braska was 18 months, so it works out nicely now that her meetings fall close to her birthday and half-birthday. I like things nice and neat like that.
So Monday afternoon was the big day. I don't really fear these meetings like some seem to, but it's not like it's fun either. I like our team, so it's not their fault. It's just sometimes hard to sit down and plot out what you want your kid to accomplish in the next 6 months. And I knew that some goals would not change from the last 6 months, in our case. Thanks to Little Miss Refuse-to-Eat. In attendance were Miss C (best service coordinator ever!), the OT, PT, and ST(By the way, that's occupational, physical, and speech therapy...all the letters...), and the nutritionist. Oh yeah, and I was there too. Of course, they always sit on the floor! Come on, people, why do I have sofas and why did I clear them of laundry and toys?!? Silly girls. They humored me and sat on the sofas. Aren't they nice?
Overall, it went well. I was pleased that everyone seemed to largely be on the same page as far as what we're looking at for the next few months, and they were very cool about the changes I wanted to make. I won't go into great detail. If you're interested in the goals, I can add more on them when I get the official copy of the updated IFSP in a few weeks. But I'll just give you an idea of what we're aiming for and what we changed or tweaked.
Kiddin' Around-- This is a new thing for us. We actually went on Monday morning and observed; well, actually we got to sit in for a bit of class. It's what I call pre-preschool, for kids that are 2 and receive some kind of EI services (if I understand it right), but there are a variety of issues. There were 5 kids there, though the teacher told me they would be getting 4 or 5 more in January when Braska starts. Her buddy, Jack, is one of those...and we're very excited that they're "starting school" together. One of the little girls in the class now has DS, and she's adorable, of course. Quite a live wire too. So there will be at least 3 of 10, and that seems cool to me. Side note: Since we live only blocks from Jack and he's just less than a month older than Braska, I'm hoping that they can go through school together. That would be so cool for a kid of mine, since I never went to the same school for more than 3 years. Anyway, KA is a weekly class, I think for a couple hours, and the teacher, Miss A, seems very nice. Since we'll be adding this weekly, and due to Kinlee's impending arrival, we decided to make some other adjustments to the schedule. Braska will start KA at the beginning of January, and from what we saw for the short while we were there on Monday, I think she's going to like it. She liked sitting in the circle in her chair and singing songs. She picked up on the Hooray! parts like a pro. And the romper room....it's like toddler heaven in the form of a colorful, cool playroom! I feel good about it fitting well into what we're working on with her now, and I like Miss A's approach to the few things we chatted about.
PT--This has been weekly, and we're keeping it that way. Braska has very low muscle tone, even for a kid with DS, so she has to work VERY hard at gross motor skills like crawling, standing, and taking steps. This is probably her most difficult element. She's just getting to where she will cruise a little at the couch, more at the bathtub. She loves to take steps when she's holding our hands, but she's not strong enough to hold it together to stand or step on her own. She'll get there, but we'll keep working hard in the meantime. She tries hard...it just takes so much more effort than it seems like it should for her. Braska likes her PT very much, so that helps alot.
ST--This has been weekly for about the last year or so. As many of you know, this is Braska's strength, in my opinion, and I think the pros would agree. She understands instructions and minds them, for the most part, and she is loving adding more verbal communication every day. Since we know that right now she is very self-motivated, we are going to back off to every other week. This will help me in easing the schedule, and we do not feel it will harm her at all at this point. We'll continue all the work we do at home on these things, which is quite a bit of reading, singing, and practicing words, sounds, and letters. And the ST sessions will focus on labeling (like pointing at a picture of milk when asked which is the milk) and working on two-word combinations. Miss J has some good ideas of what to do for our next steps, so I think Braska will continue to do well, even with the change in schedule.
OT--This has been weekly, and it has varied alot. Our OT in C-U was also kind of our PT for the first year of Braska's life and helped her through sitting, and transitioning to sitting, and working on crawling. Once we came here, our first OT was all about feeding, which was what our goals were for that area. When we changed to our current OT, the approach changed, and it has been more about interacting with food but not so much eating. Braska's never had much focus on fine motor in the "classic" sense, and she's not making any great strides in feeding, so I decided that I wanted to let go of the food element for now and go with more of the fine motor in a play-based environment. Her issues with feeding are less about sensory problems with food and more behavioral. Plainly, she's stubborn!! Well, that might only be 95% of it, but still. The cool thing with scheduling OT is that our OT is based in the same facility location as KA, so she is going to see her for sessions there during KA every other week. I think that's wonderful, and I think Braska will probably respond favorably to that change. It will ease up our schedule too. Big thanks to the OT for doing that!
Nutrition--We've been seeing the nutritionist every other week for a few months, and she works on introducing foods and feeding. Braska cooperates pretty well considering her history, but it's slow going for sure. We're going to keep it the same for now and continue this part of her feeding work. Honestly, we are just not worried about this. She will get it. It may take watching kids at school and her little sister eat and enjoy yummy food to get her to take an interest. And that's fine. We're definitely at a no-stress point with the feeding thing. It's exhausting to make it a big deal. It will come. I've no doubt. In the meantime, it takes all of 5 minutes to feed her and there's no mess. What's to complain about?!?
So there you have it....that's the important part of the meeting. It was interesting to look back over the IFSP from June and see how type A I was, and then to note how nonchalant I am about this stuff now. Life changes, priorities change, and the kid's needs change. We're alot more laid back now, and I like it. Miss C did make mention of the transition meeting in the spring. What?? Do we have to talk about that already?? Actually, I tease her, but I'm not so worried about it. I've got faith in this bunch to get us where we need to go, and I like that we have a few options about frequency for when she starts preschool next fall after the transition on her 3rd birthday. We'll deal with that later... For now, I feel good about the goals we came up with, the plan for the next few months, and Braska's progress.
Oh yeah, and I did let them know that we'd probably be off a few weeks in February when we're trying to figure out how to have 2 girls to deal with. I've gained a bit of wisdom since planning only a few days off when I had Braska! Ha...little did I know...
If you have questions about any of this, feel free to ask!
Thursday, October 2, 2008
If she gets up tonight, Daddy's on duty. She could kick him and jump on him all night and he'd still sleep.
She wasn't snoring, so that was an improvement over the congestion issues of a few weeks ago, but I still can't sleep at all when she's right there. I hear every sound, feel every quiver or kick, and it means no sleep for as long as she's there. I managed to get comfortable for a while, but it was short lived as I was on about 10 inches at the edge of our lovely king-sized bed. In my state of aches and pains, with Pepino constantly telling me that she is not happy with my position, this was not a most pleasant few hours, to say the least. But we made it until about 7:20am when M got up for work. Of course, Miss Slept Well While Mommy Didn't was happy, giggling, and ready to play, while I was a tad on the grouchy side.
We got up about 7:45am when her pleas to "get up" were finally heeded, and we started the day. Now it's 9:30 am, and I've changed her twice for massive puking episodes (we call them full-feed, because it's soon after her feeding and it sure looks like the whole 6 oz.), once for excessive diaper mess, and changed me once for her wetting on me while I was trying to whisk her to the tub. There are 6 wet spots on the carpet from puke/spit-up and the carpet cleaner that was added to try to help. We have two therapies scheduled today, ST this morning, and PT this afternoon. Napping is tricky on Thursdays with that schedule, so I've cancelled them for today due to her iffy situation and my lack of sleep and impatience with generally everything.
I'm sure it's just a fluke. She's not really acting sick. I think she might be working on another tooth or two. Whatever it is, it's not the way I like to start a day.
To end on a good note....it's so nice and cool outside, that's nice.
Darn, she just melted into a crying puddle again. For a girl who doesn't cry more than a couple times a month, normally, this is disturbing..... Happy Thursday.
Tuesday, August 19, 2008
Tonight and the rest of this week, Ryan and Julia, my youngest two sibs are staying with us to be my extra hands and helpers in these last few days before the move. And in exchange, you might say, Braska went home with Grammy and Papa for a few days.
I packed all her little things, wrote out all the instructions for feeding and such, and off she went. It's weird to think I don't get to get her up and have our morning playtime in the big bed for a few days, but she'll be fine with Grammy. I hope she's not mad at me by Saturday. She'll be happy to be home, to her new home, I'm sure.
Friday, July 18, 2008
All the nice ladies who come work with me on stuff are fun. And they always do some fun stuff. But sometimes it's hard work, too. I try to do my best, but I get tired sometimes. But today I'm gonna show you some of the fun stuff we've been doing lately!
Miss C came on Wednesday and we had a good time playing while I was having some yummy yogurt. I've been taking more bites from her, and some from Mommy too. It's kind of messy, but Mommy's trying to get used to that. Here's a movie from when Miss C was here last time.
Then Miss Lori came to help me get stronger. I showed her how I was climbing and everything, and she was so happy! Then we did some practice standing on a rocking board and up from my new feeding chair. I love my chair alot, so I don't mind when we get to use it for practicing. (Mommy note: Some of these therapy videos may seem like there's alot of nothing, but for those of us in this world of therapies and milestones that we work so hard for, these are glimmers of hope and quite exciting hints at what's just around the corner.)
I've been trying new ways to have fun climbing. This is the new way that I watched TV the other day. Mommy thought it looked silly, but I watched my whole show like this.
I like to turn around in my feeding chair, too. I haven't figured out how to get up in it on my own yet, but I'm trying.
Mommy even put another place up so I can climb even more. But then when I get up there, she takes me down so I don't fall. But I like to just lay like this and relax.
Tuesday, July 15, 2008
After they checked it out, Mommy decided it was time to put in a new button, so Daddy got the stuff and the new one, and he made it so it was ready to pull out easy. Then just like that... Daddy took it out! There was just my belly left with a little hole!
Mommy held my hands while Daddy was working on me, and he put the new button back in. I've had the same button since I first got it last year, so this was the first time we changed it. But it was really easy and it didn't even hurt.
When Daddy got it back in, he put water in the little balloon in my tummy so that the button stays where it's supposed to be.
Look, all done. New button!
And I never even got sad face. Just talked to Mommy while Daddy did the switch!
Wednesday, July 9, 2008
After Miss C left, Mommy let me play in some gooey stuff, and it wasn't so bad. Usually I don't like to have that stuff on me, but it was ok this time. I even got a little in my mouth, but not much.
On Tuesday, we went early in the morning to see a guy who measured my feet in a whole bunch of ways for my new Sure Steps to help me stand and walk. While we waited and Mommy wrote on some papers, I played in the chair.
Tuesday after lunch, Miss Jocelyn came to see me. She's an ST and she's going to help me learn words and say words. She brought bubbles for us to play with, and I wanted to do them myself.
On Wednesday we went to see Miss Stephanie again. She helps me learn to eat too, but I got a little upset again because Mommy wasn't there. She waits out in the other room during my feeding time at that place. I don't like that so much, so next time Mommy's going in with me. I did eat some pudding though.
On Thursday, Miss Lori came to play with me. She's a PT and she's going to help me learn to walk and climb and stuff. We had a fun time, and she showed me how to climb up on the couch. I even stood up for a little while with just a little help from the couch. I think I'm gonna have fun with Miss Lori and all my new friends!!
We didn't go see Miss Brandi on Friday since it was a holiday. I'll tell you about my fun holiday weekend soon. I'm trying to catch up!!
Tuesday, July 8, 2008
9 am: Braska pediatrician appt. Just to get established and make sure she had all the right info. It was pouring rain when we left, and I'm no good at kid and rain combinations. We made it barely on time. My first concession of the day was to go out in schlumpadinka fashion. Yep, I've gone there. Capris, neat shoes, and cute top--didn't happen. Yoga pants and T was it. What has happened?!?
10:15 am: Back to the apartment. It's so darn trashed there's not anywhere on the sectional to sit down. But I feel rough, so it's plop in the recliner for me while Braska plays. Dealt with some work and emails but mostly I just sat still and tried not to be dizzy.
11:00 am: Knock at the door. The PT is here. Forgot about that one. I sent an email to find out when my appt was, but didn't get a response. Darn email keeps going to spam. Ok, welcome to disaster central. Braska did great, made some big strides with pulling up to her knees at the couch. But I could hardly keep my eyes open.
12:10 pm: Feed the kid in 3 minutes. (Thank God for tube feedings at times like this.) Rock her for a minute, put her to bed, and collapse into bed myself for a quick nap. But it doesn't happen. I can't nap. I always just race through the things I need to do and what I'm NOT getting done by resting. I get so mad that I can't go to sleep that I end up more agitated every minute. I laid there for about an hour and closed my eyes even though I couldn't sleep. We've got so much to do still today! I need to get some energy!!
1:10 pm: M comes in from work for lunch. I get out of bed. I've made no lunch obviously, so he has a pudding cup and some pretzels. Thank goodness he's not a foodie. We chat a minute. He gets Braska up because speech will be here in a few.
1:30 pm: Jocelyn comes for ST. Braska plays and cooperates some. She's not much for mimicking on command yet. But she had a good time. She likes Miss Jocelyn. M heads back to work at 1:45.
2:30 pm: We leave as Jocelyn does, heading out to the realtor's office. I had texted my sister Rachel to pick me up some food on the way to meet us there since I hadn't had a chance to eat yet. She came along to corral the kiddo while we visited several places.
2:45 pm: We met up with Sandra the realtor. Headed out on our tour of 6 places. We ruled out 3, I'm on the fence about 1, and we like 2. That's not bad overall. Houses in this price range are going quickly here, so a few that we had wanted to see had already sold over the weekend. I was pleased we found a couple standouts at this price point. It was really hard to actually walk through places that we were considering. I love looking at houses. Love it! But we are downsizing, and that's proving to be more of an adjustment than I expected. We loved our 2-car garage, but no more. We loved having 2 baths, but no more. We loved our spread out room for us and guests, but no more. It will be fine. We'll have room to be, but it will be an adjustment for sure. Not to mention the pool....... but it's ok. It really is. It'll be less for me to keep up with, and I like that. I actually was pleasantly surprised, as were Rach and Sandra, at the good places we saw. I was afraid everything would require a great deal of work, but two of the options are just about turn-key. That's important since we're trying to get all this done and moved in by 8/31...the end of our short-term lease in the apartment.
5:15 pm: Back to the realtor's office. We head home. I collapse and hand Braska to M. The local DSA meeting is in 45 minutes, but nope...just can't do it.
And from that point on, my mind races. I'm replaying every bedroom, bathroom, kitchen, finishes, carpet, neighborhood, etc. I'm betting there won't be much sleep tonight. My brain doesn't have a turn-off switch when I need it. So I pray God will show us "our house" just like he did 4 years ago, clear as day. I gleaned a few little hints today, so maybe more will come. We go back tomorrow night, me and M, so he can take a look at the top 3. My hope is for a clear choice or more rule-outs.
Thursday, June 19, 2008
Feeding: She's not. Period. That's the short version. The longer version is that she does sometimes accept food in small amounts and very particular situations, but it's very rare. She's still fed about 99.8% by her g-tube. She does accept drops of "milk" (Pediasure) off my finger, and sometimes dripped from a straw, while she's getting her feedings, but that's about the only consistent element of her oral feeds. We're working to get started with new OTs through First Steps and privately, and they'll focus on feeding. We've also been looking into a few intensive feeding programs around the country, but we've found that it's highly unlikely that our insurance will pay for any of that, so we're trying the outpatient OT direction first. Just as a reminder... she has no physical reason for not eating. She has no esophageal or swallowing issues. She just plain chooses not to. That kind of makes it more difficult overall. But we're working on it. And I also like to point out that her feeding issues are NOT at this point caused by her Down syndrome. Initially it was due to her heart issues which are related to the DS, but she's gone far beyond the "norm" for feeding issues with DS. I just don't want anyone to misunderstand and think that this is a "DS thing." Her oral motor skills are actually pretty good, with her speech and all... This is just a Braska thing.
GI/G-tube: Her button is doing well. The granulation that has threatened to become a bigger problem has retracted and is not an issue for now. It is a natural part of having a g-tube as the body keeps trying to get rid of that foreign object, but thankfully, we're in good shape for now.
Cardio/heart: She is peachy as far as her heart is concerned. We've had no problems, all good reports, and she has her next check-up with her cardiologist and possible echo in November. We have no reason to believe there will be anything but a thumbs up then.
Gross motor: She's just getting ready to start regular PT. She's showing interest in standing and movement, though she is pretty firm about doing it her way. She is not crawling at this point, and she's not yet able to pull herself to a stand. She stands when propped into that position and when she can hold onto something. She can scoot around on her rear end some, but she generally rolls to where she wants to be and then sits up to get into things. She'll be getting her Sure Steps in the next month or so, and that will help with proper form for standing and learning to walk. One PT that we saw recently for an eval stated that she had "the lowest tone" she had ever seen. I said that's fine, but "can you fix it??" (This refers to low muscle tone or hypotonia, a common physical characteristic of DS, but not exclusive to kids with DS.) We know we can get her there, she's just gonna have to work hard.
Speech: She does really well with her communication, though she still has delays on the typical measurements. She can say a few words verbally: up, mama, daddy, fish. (In case you missed it, see yesterday's post.) There are a few more that she's doing sometimes, but we're not yet giving her full credit yet: badger (weird, I know...see here), teeth, and yes. She can sign several, at least some version of the sign, but it's a gesture which means the same thing every time, and she can use them in context to communicate, not just mimicking: yes, no, hi, bye, milk, please, clap. On the receptive language side (things she understands but cannot express yet) she has a bunch. Our faves to have her do for "tricks" are to give kisses and hugs, give five, put things in or out of something, splash, kick, wiggle, play music, and show her teeth. She also can lay down or stand up on command (standing with hands to grab onto). We're very pleased with how well she's doing in this. We're hoping to start with our new speech therapist in the next couple weeks.
Weight/height: She's now 18 lbs 4 oz officially. She's 28.5 inches long. She's definitely small, but she's not all bones, never fear. But it is funny that she doesn't have that little round baby belly.
Teeth: She got her bottom front two first, then her top front two, and now she's got 6 coming in at the same time. And they take SO long to come in! She's working on the two on either side of the upper front two and the bottom front two, and also two molars on the top. She's getting them in a "typical" order, and so far, no super sharp ones, so that's nice.
Overall health: She still has never had a sinus infection, ear infection, or other common sickness. She may have had a cold once, but we're not sure if it was that or her teething. But I think it's great that she's never had to have antibiotics or anything prescribed for any reason except her granulation on the button.
So that's about it I think. If you ever have questions about anything, please feel free to email me. My email is always in my profile (over to the right under Contributors). I can't tell you how much it means that we have so many people who care about our little princess. Thanks for reading her stories and watching her videos and enjoying all her cuteness!
Just for those of you who prefer pics to details and jabber about therapy, here's a few more from the tiny pool days last week.
Now how do I get it back in here?
Sorry, they just don't come any cuter than that.
Monday, April 14, 2008
Sunday morning pictures are normal, we do them alot. This week, before we left for church, Carole took a few pics of my little poonchin. They didn't all turn out great, as she kept making funny faces and moving at the last second. I stole them off her camera for my collection, and when I looked at this one I just kind of stopped.
Go ahead, click on the picture. Can you see it?
Monday, April 7, 2008
So, I'm watching the news this morning, eating my toasted oat cereal after feeding Braska, while she plays on the floor. I hear them do a tease for an upcoming piece about "do men really prefer blondes?" and I glance up to see a familiar face. I do a shake-your-head-to-clear-your-mind thing and look again, but they've already gone to commercial. I hit record on the DVR and wait for the segment. In a few minutes, it's back.
Some of you might recognize the face of that brunette, others may only know her by her shopping habits in relation to Braska Bear...that would be my younger sister, Rachel, AKA Auntie Rachel. How weird is that?! To look up and see my little sister on a national news channel?? I dialed her up right away to tell her...she had no idea. Crazy. She does look quite different now, I mean it's been like 7 or 8 years. But it's definitely her.
The backstory is that several years ago, maybe around 2000(?) or so, Rach had a good friend who worked for Fox 2 St. Louis. Somehow, this thing came around where Rach basically walked around a mall with people watching others' reactions...she was a blonde then, most of the time. Then they went and did a hair color change, and she went back to walk the mall again as a brunette. As I remember, they were observing the treatment and quality of service she got from staff in stores and just general reactions in the common spaces. It was interesting. I could have never done it! And I think it was actually that time when she went with brunette for good, at least she's been one since. (Varying shades of such...of course.) Even though the experiment showed the blonde version of her was more well-received. She was getting ready to graduate and take on the big bad professional world...and she did!
So these clips were just a smidge of the news story that was originally done, but how Fox News in NYC got them and decided to throw them in this particular blip...who knows. Just goes to prove, never know where you'll end up once you're committed to film or photo. Good to know.
Thursday, April 3, 2008
Monday evening my new friend Jen called. She had a crazy idea and wanted to know if I was game...almost literally. Deal or No Deal was coming to a mall about 45 minutes from here for open auditions on Tuesday. Did I wanna come along?? I just had to giggle...this girl is crazy fun! I thought for a moment, realized I didn't have any truly pressing issues to handle between 1 and 4 pm the next day, so I thought, Sure, I'll come along and see what happens.
First there was the application, which we printed from the online link (which is now gone or I'd link ya). The questions were about lucky moments in our lives, what made us interesting, embarrassing stories, outrageous things we've done, etc. I labored over this paper most of the evening, writing it over and over so that it would be mistake-free. I learned two things: I don't do enough hand-written work anymore to keep up my skills, and I am not all that interesting or anywhere near outrageous. Eventually, I settled on answers, completed the form cleanly, and went to bed.
We met at Jen's the next morning at 10:30 am. The event itself was from 1 to 4 pm, with the doors opening at the mall that morning at 5:30 am. What??? Why were we even bothering? And we were taking three children with us! Are we nuts? Possibly so. But after packing Jen's van full of strollers, snacks, diaper bags, kids, and us, we headed out.
We found out that morning just before we left that our friend Amy from Larkin's Place was heading over too. (Here's her take on the day. Hilarious!)) She was smart enough to leave Larkin with her MIL but took her son Chase (even skipping school!) to enjoy the fun. She was ahead of us by about 30 minutes, so when she got there she gave us the low-down on the situation, so we planned accordingly.
The line was around the outside of one end of the mall, that was the first report. It was like 38 degrees, very windy, and looking like it might rain. We knew right away we couldn't just jump in line with these three kiddos. And of course, for some odd reason, we didn't dress warm enough to wait outside... or really to stand and wait at all. We looked cute in our boots and sweaters, though! We parked and went into the mall to see what the story was. The strollers were unfolded and loaded up. Sophie--8 months, Alexander--3 years, and Braska--16 months...they were strapped in and ready to charm.
Jen and I walked in at the point where the line went into the mall from outside, right next to JCPenney. It went into what I call a corral, the back-and-forth maze like you see in front of the ticket counter at the airport, except this one was HUGE. From the corral, the line went straight down the middle of the mall, all the way to the other end. (Here's a map of the mall, for you visual detail people.) At the Bergner's end, there was an even larger corral, way larger, and then at the end of the corral, groups of 10 were lined up in 8 lines that were each taken in one group at a time.
After meeting up with Amy, talking over the options, feeding the kids, and hitting the restrooms, Jen decided she was going to give the end of the line a shot, to see how fast things moved once the event actually started at 1 pm. Amy and Chase joined her outside, and I sat with the kids in the play area inside the mall. Alexander ran and played like a crazy man with the little buddies he met there. Braska played a little on the floor and watched the others. Sophie sat with me and took it all in until she got hungry after a couple hours. We all finally got in line together just before 4 pm, as they were inside and past the first corral at that point. There were some really nice people around us, some a little on the crazy side, and some that just kept to themselves. It was an interesting picture of the Midwest, with people of all shapes, sizes, intellects, ideas, and even costumes. If you want to see some of the chaos in video form, here's the page of such things at a local news website. (Link to videos)
I was surprised at how fast the line moved, relatively, once the kids and I joined the group. It was fairly consistent movement until just after we entered the final corral at about 5:15 pm, when we figured they took a break for dinner. Things stood completely still for about 30 or 45 minutes. Then it went quite quickly through the last of the corral. Amy's sister, Penny, was with us on and off through the afternoon, and she hung with us through the corral. Being the saint she is, Penny, with help from Chase, took the kids and strollers to the side as we got to the end of the corral and were herded into our lines of 10. Amy was first in our line, then Jen, then me. We waited as the other groups of 10 were called to a table, they all talked one at a time, then they left, sometimes a few stayed behind. Right as we were about to get called up, Jen turned around and said, "Let's bail! Let's just go right now!" But it was too late, Amy was already heading toward our table and we followed.
We walked up to a table with a nice young lady standing behind it. We all settled in and around so that everyone could be seen. After we set our applications on the table, the young lady told us we'd each have 20 seconds to "sell ourselves." What in the heck do I say in 20 seconds to convince anyone I should be on a game show?!? Amy started, she's a Momologist (a word she's coined), former flight attendant, plus she has that X-factor personality. The young lady showed interest immediately at Momologist. Then it was Jen, who jumped in with "I had a baby in a moving vehicle!" She also threw in her line about climbing a mountain in Russia in a bikini. And she's darn cute and perky! I'm out...can't compete...what do I say? My mind was racing. Then it was my turn. I was standing there holding Braska. (She was on the brink of overstimulation with all the people and noise at this point. I didn't think it was fair to send her with people she hadn't met while I went in.) The young lady looked at me, as if to cue me to begin, so I did. And what I said, I don't fully remember. I remember something about being a mom even though I hadn't planned to be. Having a daughter with DS. Being crazy enough to marry a guy named Muncher and name my daughter Nebraska. It was a blur. Then I paused, and the next girl started. I just stood there. What a dork I am! I am so freaking lame! I couldn't come up with anything at all.
After the rest of the people at our table did their thing, none of which I could hear in the din of the big room, the young lady pointed at Amy, Jen, and a couple others at our table to stay for further questions. The rest of us were pointed out and around and back to the mall area. I found Penny and Chase and the kids waiting and told them Amy and Jen had been kept for round 2. We waited just a bit, then Amy emerged. She told us Jen had been kept for round 3! Round 2 had consisted of another 20 seconds, basically, then a second person jumped in with the young lady and they had 10 more seconds. Then Jen was chosen to move on. She called from in there a few minutes later. They'd been sent to a little curtained area with a small corral to wait for the next "interview." She waited, as did we, for an hour. She finally came out with us at 7:55 pm, saying when she got to the front of the line, they took another group of 10 and had the 20 second thing all over again. By this time, her pep had waned and she was a little glassy-eyed from waiting and freaking out over the whole deal. They had told the group in the small corral that this was the last room...but we're a bit suspicious if that was actually true.
There were hugs and goodbyes, and we headed to the van. Jen was cracking me up because she just couldn't believe she'd gone through the whole thing and gotten so far. In the end, none of us really know anything. The show takes all the applications and goes through them to see if they want further info from a person based on that. They could very well call Amy or Jen. It would not surprise me. They won't be calling me, and that's ok. Could I use the money? Absolutely! More than you know! But I am just not cut out for that kind of thing. It makes me think back to college, when I was the life of the party and a crazy personality, and realize that life has changed me. I'm ok with that. I just won't be a contestant on Deal or No Deal.
We pulled into Jen's driveway at about 9:15 pm I think. Her husband Mark came out to get the kids. Jen got out to go inside and left the van running. That's how fried her brain was! I just had to laugh. A crazy whim of an idea at the start, and actual shot at the show by the time the day's over. Go Jen! Win the million!!
Here's some pics from the day. Jen went out to the line initially "for a while" so we waited just inside the doors by the JCPenney customer service desk. Kudos to these kids. They were angels. Alexander was SO well-behaved all day. He should get a new train or something, Jen!
This is us...Jen, Amy, and me. See the lady behind us on the left, talking on her phone. Yeah...she did alot of that, talking.
Us in line...Me and the kids, Amy and Chase together on the right.
While we were at a standstill in the corral, I took the chance to feed Braska. It drew some attention, but everyone was super great. The kids got so much positive attention from people around us all day.
Wednesday, March 12, 2008
I don't know how people do it that have lots of sicknesses and issues that mess with the kid's sleep patterns! The norm for this kiddo of mine is that we have the night-night routine, p-jammies, kisses to Daddy, thank you prayers for all our blessings, and then I simply put her in bed and she's still and out within minutes. That's how it's been every night since she was about 2 months. Sure, there was the period in there between 2 and 3 months when we still had to do feedings at night via the NG, but she didn't wake up for those. We've been sleeping peacefully through the night at our house since immediately after surgery at 3 months. I know that's a HUGE blessing and not the norm, from what I hear, but I like it alot.
Last night I put her down in the normal manner here at the in-laws' place, in her pack n'play that she always sleeps in here. She went down and went to sleep. About 30 minutes later, she's crying. Now, I admit this has happened maybe 5 or 6 times randomly over the last year, but it's quick, she's easily calmed, and back to sleep she goes. Last night, it wasn't so easy. She went back down, but then was up again in another 15 minutes and then 15 after that. At one point she had a messy diaper, which is very weird at night--plus she'd already gone once and that's above average in a day--so I wondered about it, but she went back down. The next time, I just calmed her, then picked her up and held her while she went back to sleep. From that time on, she slept on me when she slept. I tried to put her down a few times when I thought she was good and out, but she woke immediately and squirmed around strangely so I picked her up again so as not to wake the grandparents.
So there I was, in the middle of the night, propped up in bed holding a lightly sleeping, very restless little girl. As long as I stayed very still, she did alright for 30 to 40 minutes at a time, and in a few of those, I think I dozed off, but I am famous for waking at every movement of hers, even when she's in the next room. You can see how that might make sleeping in this situation difficult. Unfortunately, I'd enjoyed a few too many Caffeine Free Diet Cokes last evening, so I had to get up twice to use the bathroom while not setting her down. I'm so glad it was pitch black, because seeing the whole things would have been disturbing for me, I think. But she managed to stay calm, even though she woke up, as long as she was plastered up against me. What a multitasker I have become!
I decided to try to give her a little bit of warm food in her tube at about 4am, thinking it might settle her and help her calm down. That whole transition resulted in a screaming fit that brought Grandma out to check on us. I was debating taking Braska to the ER at that point, as her fever was definitely the highest I'd ever known of, even though our silly thermometer that I carry wasn't working right. She was hot, that was obvious. Grandma C graciously offered to sit up with her and hold her while she slept so I could try to get a bit of sleep. I do NOT function well at all on no sleep, and although I was afraid I wouldn't be able to turn off my brain, I decided to try to sleep and let her sleep to see if things improved with a little more time. Of course I'd forgotten to bring the Tylenol along for her. Figures.
This morning I sat up quick at 7 am, a little surprised I'd slept, but feeling a little better. Braska had slept the whole time on Grandma, and though she still felt warm, it didn't seem as high. I jumped in the shower and dashed up to Walgreens to pick up some Pedialyte and Tylenol for her. I gave her a dose and she's been sleeping still ever since. I hope she can just sleep it off, but I don't like this at all. It just feels so helpless. I don't like not knowing what exactly needs to be done to fix things. I know in the grand scheme of things, this isn't the end of the world, but it's no fun, that's for sure.
Saturday, February 23, 2008
The topic today was communication, like how does your child communicate with you. (Here's Braska's version of the day, complete with video and pictures.We started with our Hello Song, then they explained that there would be toys around the room to play with, most of which the child would need help with. There were containers that needed opened and such things, so they were looking for what ways the kids used to communicate that they wanted a toy, that they needed help with it, or that they did not want it any longer. Mary-Kelsey, our student contact, led the group today, and she obviously knows ASL pretty well. She gave the group a few signs to use like open, help, mommy, daddy, and more, to have the parents use while playing with the kids.
When they turned us loose, Mary-Kelsey had set a little clear tub with a orange tube-shaped thing in it near us. It was totally the perfect thing for Braska, as you probably know if you're familiar with her at all, because she is all about tubes, ropes, cords, strings, anything that shape. I didn't figure she'd even understand the idea that it was visible through the container but she couldn't get it, so I took the top off, and she reached in for it. We've been working on container play with Miss Judy, our developmental therapist, so Braska has become faster with reaching into things to get a toy. The tube thing was a strange texture, like a gummy worm almost, and very stretchy. She liked it, initally just checking it out thoroughly with her eyes, and then grabbing it to pull. She took it with both hands, pulling it by both ends while I held the middle. We called it the Baby Bowflex, good resistance training for her little arms. She even went after it mouth-first at one point, which is not something she usually does. She took little breaks, but stayed with it for quite a while. There are some pics and videos on her site, of course, if you would like a visual example.
She also did plenty of her favorite thing the last few days...squats. She's decided that she needs to be moving all the time, and this is SO NOT been her pattern up til recently. And it's taking some getting used to for me, that's for sure. She will reach around when she's sitting in my lap, grabbing for something to hold onto, but more so that I will pick her up. Then she plants her feet on my legs and straightens up to a stand. I have to steady her right at the hip joints on both side, but otherwise, she's good to go. She holds that for about 10 seconds or so then drops to a squat, but not all the way to sitting. She waits a second or two then goes back up. It's amazing to see her working with all this strength out of nowhere, it seems. She'll do this about 6 or 7 times, then she'll plop down for a break of about a minute or two, and she's reaching around and ready to go again. She spent most of the rest of the playtime doing this, not interested in the toys so much.
When it came time for snack, they told us that they had the snacks in containers that would need opening, so they wanted to see how the children showed that they wanted the food and help getting it. M and I just laughed, thinking how long we would be waiting if we waited for her to show that she actually desired food. But we took her to the little table, gave her some of the colored goldfish, and figured that was it.
Then came our breakthrough of the day.... I feel like a need a drum roll here. I told M to put one of the goldfish on her lip or tongue so she could get a taste, just because this is what we try to do when food is in front of her. Showing her that it has flavor different than a toy, thinking that it might peak her interest at some point. Well, today was that day. She smacked her lips a bit from the salty fish, and then out come the tongue as she leaned forward toward her dad's hand that was holding it. He wasn't paying attention at first, so I poked him and said, "She wants it!" He held it up there and she licked. Again, and again, and again. She would take a little break here and there and push his hand away, but then she'd always come back to it. When she'd lick all the salty goodness off, he'd get a new one. And there she would go again. It was crazy. The students were video taping, as they do each class, so they were getting it. We were cheering, but not too loudly to startle her or distract her too much, and the other kids were totally uninterested, which was totally fine. One of the fish got kind of soggy with the licking, and she was opening her mouth just a tad with her tongue out, so M stuck it in to see what she would do. She didn't spit it out immediately via big messy raspberries that she usually does. She kind of held it in and just looked at us. I was trying to get her to take a little water from the sippy, but that wasn't going to happen, so I took the lid off and kind of poured it in her mouth to moisten things up. She managed it well, only a little came out later, with a slight little gag reaction, but not bad at all. She ended up getting two by the time it was over.
Needless to say, we were pretty excited, as were the students and supervisor. It was fun to watch her do something new. But we are not calling to have the g-tube scheduled to be removed just yet. She's famous for doing something amazing once and not repeating that show. There was the bottle in the hospital last April (took the whole darn thing several times, only to refuse it once we got home, never to take one again), then there was feeding herself with a spoon of baby food, also never to be seen again. So we celebrate our little breakthrough, but we're not unrealistic that this is a new trend. If she continues to explore foods more, we'll be very happy, but if not, it's ok. She'll get there one day.
All in all, a good playgroup day. I didn't do nearly as much watching and interacting with the other kids today since Braska was busy with things the whole time, but everyone was nice and greeted everyone else. It seems to be a really nice group of people. I feel better about the whole thing, and I think it will be good for Braska, most importantly.
Monday, February 18, 2008
Today marks one year from when Braska started telling her "stories" through this blog. She was just shy of 3 months old and preparing for open-heart surgery the next week. In an attempt to keep the grandparents happy with plenty of updates on how she felt that day and what fun things she was learning from her baby bouncy seat, she decided to share a story each day, along with a few pictures here and there.
Braska has come a long way...a very long way. She has gone from a quiet, very calm baby whose heart was working hard to keep her awake for longer than a few hours at a time to a little almost-toddler who has decided that she wants to try things (not eating, of course), go places, and interact with us in ways I honestly didn't think we'd experience for much longer than it has been. She has now worked about 11 months with developmental therapy and occupational therapy and about 6 months with speech/feeding therapy. She's mastered rolling, finally conquered sitting, she's working on standing, and if we could only convince her to eat! She spent 8 days in the hospital for heart surgery, 7 days in the hospital for rotavirus/dehydration, one overnight for her PEG procedure, only a few hours for her PEG to button change, and minutes for the granulation removal. (That's not counting the 24 days in the NICU pre-blog.) We've accumulated a long list of doctors, all of whom who have been very helpful and thorough with our various issues. And we've learned the road from Champaign to St. Louis well enough to drive it in our sleep....but we won't.
This venture has become a blog monster that neither of us ever expected. It has served as a comfort to me during the beginning, when I needed adult conversation and support badly. It has served as a virtual diary of sorts to save and look back on when I can't remember the date something happened. And most importantly, it has served as the venue through which we've met and come to know so many people who have offered SO much knowledge, support, encouragement, and acceptance. I can't even imagine my day without blogging, as sad as that seems sometimes. But it's an outlet, and it's something I really enjoy. It has helped to educate and inform many people who didn't know about DS or had never seen a baby with it. It has even played a part in helping at least one mother decide to give her baby the chance to live, and what a beautiful, precious LOVED baby she is. I feel sure it has touched lives we don't know about and maybe never will. That's ok. We're thankful for the opportunity to say hello each time you stop in to check in on the happenings in our day. I really consider it an honor that so many of you are regular readers and care so much about what's going on in the life of my daughter and our family. It is not taken for granted, let me assure you.
In order to reminisce just a bit, here are some favorite posts, some important ones, and a little glimpse at our journey over the last year.
~~To start with, of course, the first post on the blog... A baby blog?
~~Some of our open-heart surgery posts... Sleeping Beauty, the first day of fixed-heart wiggles, the last day in the hospital, and the day to go home!
~~There's been lots of therapy pictures and info...Miss Robin's first visit, Miss Judy's playtimes, and eye tests with Miss Sue. Don't forget all the feeding with Miss Louise, like the day she surprised us all, and the messes we've made.
~~There was Braska's first pool day.
~~She worked hard at rolling.
~~Can't forget the glasses!
~~Just this month she started to think about standing.
~~There was plenty of Bears football watching, including dressing for the part.
~~We shared about lots of doctors and hospitals and procedures and such. Like when she got her new tube (PEG), and how she first reacted, and what she thought about it.
~~We learned alot at her six-month appointments at the DS clinic, from both her perspective and the adult detailed version, and her one-year check-ups as well.
It's been quite a ride, and it's "only just begun", as the Carpenters would say. For the few of you who have been on board from the beginning, thanks for sticking with us. For all of you that have jumped on our little bandwagon along with way, we're SO glad to have you on the journey with us. Here's to another fun-filled year and many more to follow.
Saturday, February 16, 2008
This morning we went to the Stay N Play Playgroup hosted by the University of Illinois Early Childhood Development Lab. Braska was chosen to participate in this group, and I was glad to have the chance for her to interact with other kids and with students who would learn from her too. I thought that there would be some other kids with developmental delays, maybe even DS, but that wasn't the case. She was the lone "non-typical" kid. Initially, I wasn't sure how this would go. The students and supervising faculty are super nice. They obviously love kids and playing with and teaching them. The group we're in is 8 children, ages 7 months to 15 months. We're at the high end of the chronological age and closer to the low end of the developmental age. But I figured at least we wouldn't be the only one to just sit and watch, playing kind of our own. I was wrong, though.
Little Kathryn, 15 months, was crawling up in her own chair, running like a champ, sharing toys, and obeying instructions. She was just adorable, adopted from an Asian country, super petite (only a pound more than Braska), and obviously very smart. Even the youngest one, 8 1/2 month old Madeline, was crawling all over the place like a pro. There was Phoena (fee-na), Reece, and Sheila all running about and happy when they had a toy they liked. Alina was 10 months and cute as a button. She sat next to us at snack and devoured her colored goldfish. Then there was Braxton, the lone boy, 15 months, and wow...I steered Braska out of his radar whenever possible. He was big, dangerous, handsy, and one seriously drooling, coughing, and snotting machine. His mom was very nice, but she had her hands full. Poor guy didn't know what to do with so many cute girls within his reach!
Times like these, which haven't been all that frequent, usually surprise me by invoking a reaction that I don't expect. I sat there for the first several minutes, watching the others run around and play and share, thinking that this was just not going to work. God bless M for going with me. I didn't even ask him to go. I didn't even hint at it in the least. I just assumed he'd stay home and Braska and I would check it out. But he went, and I was glad to see some other dads there too.
It's not that I don't know the reality of our situation. It's not that I am not aware of Braska's delays and limitations. It's not that I'm embarrassed of her delays. It's not even that I'm resentful of the "normal" kids or their parents. I think it's more that I feel the need to explain things. I want to defend her, show that she's not without merit or value. I tend to rely on her good looks, silly as that sounds. Everyone gushes over how adorable she is, everywhere we go. I've never had a negative comment about her at all in public, which I know happens to alot of parents in my shoes. The glasses are a big draw, everyone cooing and asking about them. She gets compliments on her hair and her snazzy outfits, and I am proud that she gets positive reactions. I'm admittedly big on appearances, so I'm pleased that people find my kid cute and not repulsive. That's natural and acceptable, right? I know it's an issue for me to work on, my shallow nature regarding the outside. But in these situations, that's my comfortable place. That's where I know we can move the conversation to and relax.
Today we participated, she played, we sang along with "The Hello Song" and it's close relative, "The Goodbye Song." I think it's good for Braska to have this kind of exposure, since she spends 96% percent of her time with just us, and the remainder is spent with a very small circle of friends who we don't see that often. The students and supervisor were great, especially Mary-Kelsey, our assigned student for the semester. They asked about what things they could incorporate for Braska, what types of toys or items that she would best respond to or that would assist in meeting her developmental goals in EI. It's very nice of them to take these things into consideration. I have to think they thought that she would be an interesting subject for the class and this part of the semester requirements for the students, or we wouldn't have been chosen for the group. They had all her background and info from the beginning. Mary-Kelsey is a speech pathology student, and I say it never hurts to have more exposure to speech/language and feeding help.
Introductions were done of the kids, but not with ages or any other info. So we gleaned ages just from hearing people ask and answer while the kids were playing. This is where I felt a bit lost. I didn't get to explain why she didn't crawl to get toys. I didn't get to explain why she was the only one at the table who shuffled her snack but didn't put it anywhere near her mouth, why her sippy cup was the only one not touched. I didn't even get to use the words Down syndrome. Is that good? Should I be glad it wasn't an issue? Or did they all just know and ignore it? Did they just think "something's different about that kid" and leave it at that? I don't know. I wonder if they were trying to be all about the inclusion thing and didn't want to make us feel different or like a stand-out.
I don't know. I guess I'm still processing. As I sit here, I'm not upset at all. I'm not hurt or disappointed or anything. Please don't think that or read that into the picture. I'm just thinking through the morning. I wonder why I reacted like I did. I mean, I know why I kept her from Braxton's reach.
Above all, I'm proud of her for not flipping out in a situation that was very overwhelming. The noise and the people and the unfamiliar place. These are things that often are too much for her individually, but together, I was sure it would bring a withdrawal, at least. But she didn't seem to mind. She watched at first, kind of let it all sink in and process, then she played. Mostly she played with the things we gave her, she's easy like that. But there were a couple things that she's used with her therapists, so she particularly liked those. She babbled a little, and she didn't mind at all sitting in a little kid chair at the table for about 10 minutes playing with colored goldfish and banging on the table. I'm anxious to see how it goes as we move forward. This lasts til the end of March or early April, I think. Every Saturday morning, we'll go and play. I bet by the end things will be very different, so that will be fun to see. And most of all, I'll probably learn alot and work through my own internal things. It's about time, I'd say.
Way to go, Braska Bear. Thanks for going, M.
Friday, February 1, 2008
Tonight I was packing the bag for them, and I'm trying to make it very clear what my intentions are for Braska's stuff without packing notes with each item. But when it comes to dressing for church, there's no taking chances. So I made a little bundle of things, including her onesie, tights, shoes, hair bow, and the three-piece outfit.
Too much?? I think not. M would admit to not having a clue about how to dress her when it comes to needing to match. I'm just trying to be helpful. For the "casualwear," I didn't go to such lengths, leaving off the ribbon-tied element. I just put BabyLegs and socks inside the matching folded long-sleeved onesie...times 3. (She tends to ooze after feedings sometimes, and I can't stand to leave her in wet, icky clothes.)
Here's hoping for a productive couple of days, and that Braska will behave for her Pop. She's awfully darn attached to me. This will be the longest she's been away from Mommy. I think I'm due for a break, even if it is a work-36-hours-straight break!