Retropost: LOTS of therapy

Last week I got to meet all my new therapist friends with First Steps. Monday Miss C came. She's an OT and she's going to help me learn to eat better. I ate a little bit of beans from the Mexican place that we had left over, and I tried to take a little bit of water from my nosey cup.


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!!

Doctor Therapists Realtor

I knew this was gonna be a busy week, but today was a little ridiculous.

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.

Mommy report: 19 month update

It's hard to believe that Braska is coming up on 19 months in just a couple days. Just doesn't seem like that's possible. But what do I know... I've never done this before. I thought I'd kind of summarize where we are, partly for my use later, as the blog is my electronic baby book, and partly because there are a few of you out there who actually are occasionally interested in more info than just cute pics and giggles. Shocking, maybe.

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.

Peek at tomorrow

This weekend we were at my in-laws' place for a very quick visit. We went largely for a housewarming for Cheryl and Ethon, which was Sunday afternoon. They have a pretty darn cool place, so yay for you guys!

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.

It's not any super great picture. It's cute, but hey, how could it not be? She's waving at herself, that's the reason the hand is up. But that's not what I saw.

Go ahead, click on the picture. Can you see it?

I don't see Down syndrome. I don't see a feeding tube. I don't even see a tough cookie, open-heart surgery survivor. It's not my favorite picture of her ever, but I can't hardly stop looking at it. This picture, to me, is a picture of what's to come. She looks less baby-like here. She has a whole different look to her, which I think will be amazing to compare to a 2nd grade picture or something in a few years. I can't explain it, I just see our future there. I don't think she really resembles either of us, now or in this pic, but I do see more of herself coming out in her face here. There's something grown-up about that little smile. I just can't wait to see how she grows into her personality. She's going to be one great little girl.

Hey! I know that face!

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.

Make an on-line slide show at www.OneTrueMedia.com

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.

Too Lame To Deal

What does one do with a day when there is nothing on the schedule but "regular" things like work-work and dishes and laundry? Well, of course, they go stand in line for hours for a 20-second chance at fame and a million bucks!

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.

Overall, it was a cool experience. I'm glad I went. I'll never say I didn't try. And I really hope one of my girls gets the BIG call! Be watching for updates!

Sit and stay sans dog

Braska's sick. If you're up to date on her blog, you probably got the message.

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.