Tuesday, February 10, 2009

A little update and more newborn pics

We had an ok night, got some sleep, ate ok, until about 5:00 am when she decided to just be awake and a little whiny for a while. We made it through.

Pediatrician's check this morning was ok...not perfect. There is an issue with her left hip, not unheard of, but something to check out. A definite click/clunk, as they call it. Possible hip dysplasia. We'll have it checked out with an ultrasound to see what's up in the next week or so, sounds like. But that explains why she has really hated being messed with on that leg for diapers. No biggie...we listened and said, "Got it. We can handle that." What a difference life experience makes, huh? We'll be here til tomorrow morning then head home. M may go back to work tomorrow, since my mom is here, to save a few days for when we're on our own next week.

Now, on to the pics, and I'm gonna see if I can catch a little nap after some feeding.

Sleeping beauty. (Anyone see a resemblance in that profile... and you SO better not say her mommy!)





Soft, dark hair, with one little blond patch that you can't see here.


One very wrinkled and VERY long foot!


One nibblin' good ear...again, some of you will recognize this ear.


Snuggling with one very tired (but freshly showered...yay!!) Mommy.


Checking things out on day 2.

Wednesday, December 10, 2008

Mommy report: IFSP meeting 12/08/08

It's that time again... time to look at what we've accomplished and where we're headed. Or I should say what BRASKA'S accomplished, since I'm not working all that hard, but she IS.

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

Let's try this again

No nap was had by me today, so now it's time to get this kid fed and try to get a peaceful night of sleep. She's had a good day since this morning's unfortunate start. I think it's teething, it seems as we've moved through the day. We'll give her some pain meds with this last feeding and hope for rest. She did have one good nap, but I had too much work to get done to take advantage of it. Never fails...

If she gets up tonight, Daddy's on duty. She could kick him and jump on him all night and he'd still sleep.

31 for 21: Off to a great start

Braska was up at 3am in the oh-so-frustrating way she does on rare occasions, sitting up and crying in her crib. After a few tries of rocking til she was asleep and then putting her back in bed, only for her to pop up right away saying "up! up!", she went back to bed with me. As I've mentioned before, I'm not at ALL a fan of kids sleeping in the parents' bed. But when the two options are for me to sit and rock her while she sleeps or to lie down and at least rest while she sleeps, I go for the horizontal position.

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

Sleepover

The fam came today and primed and painted the living room and hall. It looks nice, though the color I picked is a bit lighter than I thought. It's good though. Sugar Beige, it's called. Yum.

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

Fun parts of therapy

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.

When I've been climbing a while, I get pretty tired.

Tuesday, July 15, 2008

Leaky belly

On Sunday Mommy was feeding me my vanilla milk when she looked and saw that I was sitting in a big puddle of milk in my chair! She put me down and Daddy looked to see what was wrong. The milk was coming right out of my second button where it's supposed to go in.

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!