Tuesday, December 30, 2008

Enjoying my presents

I got some good things on Christmas Day. Books to read and toys to play with and learn with. I've been enjoying playing with all of it this week. Mommy only lets me have some of it at a time so I don't get tired of it all.

Grandpa J got me a great big bag of color balls, and they are fun! Mommy put the gate up in the hallway and closed all the doors so I could just push them all over and they couldn't get away. I played with them for a LONG time!

Here's a little movie of me playing with my color balls too.

I also got some drums to play with in the bath tub, and I figured out how to do them the first time I played with them! Here's another little movie to show you.
(Mommy note: There is a pretty impressive minute in there for us...she "got it" about the drums in a way we didn't expect. Can you tell what it was??)

Thursday, December 25, 2008

2008 Christmas #2

We had more Christmas today! This morning we got up and had some presents to open from some very nice ladies at Daddy's work. Since we didn't have presents at our house until these, it was fun to get up and have something to open! Isn't that super sweet of them?? I got a very fun puzzle that will be good for me to practice with. It has animals on it!!


Then we got dressed and ready to go to Grandma C's house. I played in the paper for a while, and that was tons of fun!


Then Mommy said it was time to go have even MORE Christmas! I couldn't believe it!


I told Belle all about it, but she just stayed home and napped.


I got some fun books and toys, and they'll all help me to learn and get stronger. And there was plenty of Elmo!! It was fun after it was over, but I didn't feel like opening the presents myself. I played with them later after things were quieter though.


Here's me and Shaylin. We only have a few weeks left to be THE cousins. My mommy and Shay's mommy are both having babies in February, so we'll have to share with them next year.


Shay got this cool chair, but she let me use it to watch some shows while the big people played games. I needed some quiet time and then I felt better.


Thanks for all my nice presents, Grandma and Grandpa!! And Santa and Uncle Ethon and Miss Cheryl too!
I hope you all had a good Christmas, or two!

Wednesday, December 24, 2008

2008 Christmas #1

Today we went to Grammy and Papa's house. Everyone was there again, just like back on Turkey Day. We got there and played some games before everyone else got there. I played with some fun toys that Grammy had. Mommy and Daddy played with the other kids and Papa some game about words.


Everyone laughed alot today, and I didn't like that. Sometimes people laughing alot bothers me and makes me cry. Today I didn't feel very good, and it upset me a few times when they all got silly and loud. Daddy and Belle tried to make me happy again.


We had a yummy lunch, but I only took one tiny bite of smashed potatoes and then I was "Done!" I took a nap while everyone else opened presents. It took a long time, but there was some good stuff. Papa got the most presents, and that was a pretty big deal! I got some neat things, like a REALLY big book! Kinlee even got presents, but she couldn't open them, so Mommy and Daddy did it. We got home, and I'm going to bed early!

Tomorrow we go to Grandma C and Grandpa J's house for more fun times.


Merry Christmas!!

Monday, December 22, 2008

Mommy report: Kick the sick!

Well, we're on day 12 of this crazy cough, cold, icky stuff. Braska's first cold, and it's lasting this long? I think there's more to the story. Since she developed a rash yesterday to go along with the rest of the stuff, I took her in to the pediatrician today, and the verdict is a sinus infection to start with. Then the rash is a strep rash, but the strep test came back negative. Many of you know that sometimes these goofy kids of ours can trick the strep tests and carry it to others without actually showing all the signs, like fever, themselves. So we're treating for sinus infection and strep, and hopefully this will prove to begin the end of this. I'm hoping that her getting better will mean I can finally start to get over my side of things too.

So we'll be hanging out for another couple of days and hoping that by the time we need to head down to my parents on Wednesday we will all be well down the path toward being all better.

Merry Christmas!

Moving a little faster

I've been working on crawling for a long time. I just don't see why everyone wants me to do it. I can scoot around pretty quick, so why bother, right? But I've been trying it out for a while, just a little at a time.

Last night, Mommy caught me coming down the hallway from my room. She thought I had been making it faster than usual when I went down there to play, so she went to see what I was doing. Take a peek at my new little movie!

Saturday, December 20, 2008

I'm an UP girl!

Me and Mommy are still sick. Can you believe how long it's been?? I hope it's done soon. We've been mostly just resting and napping and playing some too. Here's a couple pictures from the last few days.

I'm having lots of fun standing up and playing with stuff that's not on the floor. Everyone says that it's good for me to help my legs get strong. My PT brought me a fun thing that I like to practice my steps with. I can go all the way down the hall with some help. I get to borrow it to practice for a couple weeks.


And I'm learning to get up on other things too, like the gate to the kitchen. Sometimes it is to keep Belle in there, and sometimes it's to keep me out! But I figured out today that I could hold on to it and stand up.

Thursday, December 18, 2008

Happy Birthday, Grammy!

Today's Grammy's birthday! She went home yesterday after coming to help us for a couple days since Mommy and I have been sick. We had a good time reading and playing and taking baths. I didn't even yell when she cleaned out my nose! She must just know how to do it right!

We didn't take any pictures, isn't that silly!?!

Have a good birthday, Grammy!

Saturday, December 13, 2008

Tubs can be fun without water!

Today me and Mommy are hanging out at home. Daddy went to play cards with the guys back at our old town, but since we weren't feeling good we didn't get to go. I've had alot of stuff coming out of my nose, and it makes me grouchy. And I learned that when I'm grouchy, Mommy can get grouchy too. So we thought we better not go with Daddy this time.

Miss Julie, Jack's mom, brought me some medicine yesterday that works good for Jack, and it's helping me. Thank you Miss Julie!!!

This morning I went down the hall to my room, but I found out that the door to the bathroom was open, so I went in there instead. Mommy came looking for me when she heard me talking in there, and she found me. She must have thought it was good because she went to get the camera real quick.


The reason it's good is because I can't usually get up by myself. She even sat me back down and told me to do it again, so I showed her how I stood up all by myself!


I always like to play at the tub when Mommy puts me there while she's getting my bath ready. So I just thought I'd go play even though I already had my bath today.


And I always do my best side-steps when I'm at the tub, not at the couch like we practice. So while Mommy was watching, I just decided to show off how good I'm getting.

Wednesday, December 10, 2008

Standing and splashing

Today I practiced standing alot. I'm working on helping my legs get stronger so I can walk by myself soon. I was a little grouchy though, maybe because my teeth hurt some, so I just did little bits at a time.

My friends Amber and Katelyn gave me these fun tables to play with, and Mommy put them close to each other so I could go from one to the other. It takes me a while, but I am getting better.


I also practiced my standing and sitting today, and I'm getting so much faster! Look at me go!


Then tonight I took a bath and Daddy helped me wash my hair. He is so silly, and he made me look silly too!

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!

Tuesday, December 9, 2008

Picture catch-up, November

These are some pictures that I didn't get put up when we took them. So I'll just put a bunch of them up for you to see.

I borrowed Daddy's hat because it matched my dress pretty good!


Don't you think it looks better on me???


We went for a quick visit with Miss Jessie and our friends at her church. Miss Melanie is so nice and she always reads my stories, so I showed her how good I'm getting at practicing steps. We all went to lunch together and it was pretty fun to play with the boys at Miss Jessie's house after.


For Thanksgiving, we went to Grammy and Papa's house. It was a nice day, and I just played around on the floor alot. We call it "chilling out." I made some funny faces when Mommy tried to take pictures.


The next day, we went back to the kids hospital so I could do another test. This time we got the nice lady who doesn't hurt me when she takes my blood. Daddy went with us this time and we got to look out the big high-up window by where we parked the car. I just love the wind!



Saturday, December 6, 2008

My new old friend

Yesterday me and Mommy went on a little trip and came home with Belle. Remember our little dog when we lived in our old house? Well, I don't really remember her very good, and so I was pretty scared of her. Yesterday I didn't want to play on the floor or anything, but today we are doing ok. She just leaves me alone, pretty much, so it's ok.

This morning Mommy and Daddy fixed our back door so that Belle has her own that we don't have to open for her. It's pretty funny when Belle goes through it, but she doesn't like it yet. It's a little different than the one at her last house. She's getting better, but I'm trying to help her practice.

Here's me showing her that it's a happy thing to use her little door.


And then I showed her where to go out.


She will figure it out one of these days soon.

I'm trying to catch up on pictures, so there should be a bunch soon!!

Wednesday, December 3, 2008

Digging for goodies

The OT came today to see me. I've had a couple of weeks off, so this was the day to remember what to do. First we did some really messy stuff with food colors that I got on my face and p-jammies. But then she gave me a box with rice in it that I liked to throw on the floor. There were little things hidden in there.

Tuesday, December 2, 2008

More birthday pics

There are so many good pictures from my birthday that we decided to put a few together to share in one spot. Remember, you can click on the picture to make it bigger to see better.

Thanks to everyone who got me nice things and sent birthday cards! I had so much fun with all those envelopes!!

Friday, November 28, 2008

Mommy report: 2-year visit day, part 2

If you missed part 1, click here to catch up.

And before I get back to the story, there were a couple questions, so I wanted to throw the answers in here, even though I replied by email, in case they're helpful or interesting to others.

  1. What was the heart defect that Braska had? She had complete AV canal, sometimes known as AVSD in simple terms. She was diagnosed the day after she was born and had surgery to repair it at 3 months. It was a large hole between the upper chambers and another between the lower chambers, and both actually meet to make one hole. She also had some valve issues since there was nothing for one side of the mitral valve to attach to, so they repaired all that in one surgery… 9 ½ hours. But she’s been peachy ever since!

  2. Why so many (appointments)?? We just see her reg ped once a year unless she is sick. Much of what we do on these day-long adventures is preventive medicine. In other words, it's making sure we're not heading toward problems, not so much dealing with current problems. But some are to keep tabs on issues already in the making. Since she had heart issues and surgery, we follow with the cardiologist. The GI is because she has a G-tube/button, so he makes sure all is well with that. We see the eye center because she has a couple of common eye diagnoses and wears glasses, so they make sure things aren't getting worse. ENT is largely preventive, in that she's not had any ear issues, but they can occur with DS due to the very small ear canals. The DS specialist just kind of keeps things organized and makes sure we know what we need to look for in the near future, and they also do all her lab orders to check for common issues with DS that can show up in blood work, like thyroid problems, Celiac disease, and such. Audiology is preventive as well, to make sure that there are no hearing issues developing, as that can be common with DS as well. I've never found that a regular pediatrician knows enough about the difference in the physical issues of kids with DS to suffice. I'm sure they exist, but I wouldn't do without someone who is actually an expert in this particular syndrome and all it can mean. Our pediatrician is nice, we only see her for well-checks since Braska's not been sick, but she has hardly any patients with DS and is not up on the recommended protocols for lab checks and particular issues. So we stick with the DS Center for that. Not everyone needs all these specialists, of course, but again, a few of them are preventive, like eyes and ENT.

Ok, now back to the big long day of docs...

After the echo, we finally went down to the cafeteria to grab some lunch. We had about 30 minutes til the next appointment at 1pm, so I didn't want to try to fit in the audiology visit that we had postponed earlier since I really needed to eat. Here's all you need to know about lunch... onion rings. Can I get a witness? Jen, I know you're with me! SLCH onion rings--yum-o!

Eye Center: Backstory--Braska started seeing the eye center at 6 months, which is recommended for kids with DS due to the commonality of visual issues that can occur. She saw Dr. C, the ophthalmologist, due to her nystagmus (kind of an eye wiggling) and she noticed that Braska was just starting to show some esotropia (eye turning inward, like crossing on one side) but it wasn't bad. At her 12-month appointment, we saw the optometrist as well that works with Dr. C, the esotropia had worsened and they determined that she needed glasses. She was crossing in order to try to focus, and she was very farsighted. So we got glasses and she's been amazingly more interactive ever since. Back in March this year, I wondered if she needed a new prescription, and we had her checked, but things were ok.

We got back upstairs to the eye center at 1pm, and the place was packed. I'd never seen all these waiting rooms so busy as they were that day! This is what I get for saying we never wait in this clinic either. It ended up being after 1:30pm before we were called back. Dr. R listened while I explained what she's been up to, looked at her, and dilated her eyes. We returned to the waiting room to allow the 30 mins to pass so they could do the exam to check for her correct prescription. This time, the exam showed that she needed a new prescription, so new lenses are in process. (They don't do the actual glasses stuff there at the SLCH Eye Center, as far as ordering and all, so we go to another place for that, one that specializes in infant eyewear, St. John's Mercy Eye Clinic--For Kids Only.) We got out of the eye center in time to head over to Suite C once again where GI was now seeing patients.

GI (Gastroenterology/Gastro-intestinal issues): We got to GI about 15 minutes before our appointment time at 3pm. This is the one clinic I sometimes wait in. I ran upstairs to audiology to let them know I hadn't forgotten to come back, just that we'd not had any breaks as I'd expected. They said to come up after we got done in GI. In previous appointments with GI, it's not been unusual to wait 25 minutes after my appointment time to get started. Of course, as the entire day had gone, I was wrong in my prediction, and we got taken back early. First the fellow came in (doctor training in that specialty) and she chatted with us about how things were going. Then Dr. R came in as well. He felt she was doing well. Her only med is an over-the-counter one for mild constipation issues. That's all in check, so no problems or changes there. Her button looks good, so we only needed to check a couple labs to be sure all the internal matches what we're seeing. They added those labs to the order we had from the DS Center and said to come back in 6 months. He is still concerned about her eating issues, obviously, but since we're seeing nutrition and speech and OT, we'll stick with that for now. He does want to do a couple tests in the next few months, so we'll be setting that up, though I don't know that Braska will cooperate with these. We'll see how the next months go.

Audiology (Hearing test): We got back up to audiology just in time to get in for a hearing test prior to them being done for the day. Unfortunately, Braska had finally fallen asleep on Grandma C in the 5 minutes between visits... poor thing. What a long day! I was afraid she'd not cooperate at all with this process, but we woke her and decided to give it a try. She has not been at all interested in doing this game of looking in the direction of the speaker where the noise comes out in the soundproof booth. I figured with her being so tired, this would only be worse. We started with the tympanogram, which they always do, and we always fail. For a typical child, this would indicate problems like fluid behind the ear drums, and could indicate a hearing concern. For Braska, and many kids with DS, this just means... well, nothing really. Their ear canals, like Braska's, are very narrow, so the tympanogram cannot behave like the test expects it to. Since we'd just had her checked out that morning, and no fluid or any concern was present, this test is really meaningless. But they like to do it, so we let them. It's quick and painless, so I didn't argue. Then we went into the little booth. She ended up doing much better than she had before, and it was a pretty successful process. We go back in 6 months to do ENT and audiology again, as expected.

Lab (Blood draw): Finally it was time to hit the lab and be done. We went back downstairs and gave them the order. I do ALL Braska's labs at Children's because they're that good. I can have her drawn 5 minutes from home or drive 30 minutes to Children's to let them do it. And I'll drive the 30 minutes every time. Each time we've been there, they have gotten her on the first stick. That's RARE with my skinny little thing. I can't tell you how many times other phlebotomists have had to try 3 and 4 times before we found SLCH. So we go there. And we have a favorite tech, who has even drawn Braska without her shedding one tear or making a sound a couple times. That is worth everything. This time, I saw our fave, but as I was way weary from the day and not thinking straight, I didn't make the request to have her. So we got the other one that was there. She's nice, but I should have stuck to the plan and gone with our fave. We went back, Grandma C stayed in the waiting room by choice, and as feared, she had two sticks. The first one she got in there and then "fished around" as I call it, causing Braska to scream. I let her try the other arm, but I wasn't going to allow any further one if that didn't work. Thank goodness it did. But poor Braska was so tired that she just fell apart. We were finally headed home, after a pause to calm her down and get some more milk in her belly.

After a stop to pick up Shay at Cheryl's house and then dropping Shay and Grandma C off at home, we headed back north toward home. A long day, yes. An unusually crazy day at SLCH, yes. But SO worth it to have great docs and coordinated care to make sure no bases are missed. We moved in order to be nearer to these doctors and that place, so we obviously think it's that important. This particular day did not go as smoothly as planned, but we made it through.

As a follow-up: Braska had some abnormal lab results from the draw on Tuesday, so we went back on Friday morning for another one. (This one was with our fave tech and went very well. No tears or crying at all.) We don't have those results yet, but we'll let you know. As far as we know, the thyroid and Celiac tests were all good.

Thursday, November 27, 2008

Family Thanksgiving 2008

I hope you all had a fun day eating yummy food and being thankful for all your blessings! We went to Grammy and Papa's house and the whole bunch of Mommy's family was there. I didn't eat anything, but everyone else said the food was super good!

(Aunties Julia and Joy in front. Then Uncle Jody, Auntie Skye, Uncle Ryan, Daddy and me. In the back is Papa and Grammy, Auntie Rachel and Mr. Patrick, and Mommy.)

Wednesday, November 26, 2008

Mommy report: 2-year visit day, part 1

Tuesday we went to Children's to see most of Braska's specialists in one day. This has been our habit at 6 months, 12 months, and 18 months. It's worked well each time. That's the good news.

This post will be interesting to some, confusing to many, and is mostly for my own record keeping. So read along, but don't feel obligated to understand it all!

And by the way, please feel free to ask questions at any point about Braska's care or therapies or daily life. I love to hear from those of you who want to know more details about things for whatever reason. So don't hesitate to ask!

My mother-in-law was good enough to arrange her schedule this week so that she could join us to be extra hands throughout the day. This was a good thing! We met at Children's at just after 8:30am. We headed upstairs to the 3rd floor to start our day of waiting rooms and exam rooms.

ENT/audiology (Ear, nose, and throat, AKA otolaryngology): We see Dr. M every 3 to 6 months. He is great. The last time we were there, we saw Miss C, his nurse practitioner. She is nice, but I prefer to see the doctor in this scenario for a variety of reasons. This time, we were scheduled with Miss C again, though I had been told we'd see Dr. M. Our appointment was at 8:45am, we arrived in the office before 8:40am and checked in. After the typical verifying of insurance and paying the copay (Man, those add up in a day like this!!), we sat to wait. I had told my MIL that we rarely ever wait at any of these clinics. They always seems to be well-scheduled and very efficient. Famous last words. At ENT, we usually have her ears cleaned and checked, then we go to audiology for her hearing tests. This usually all fits within an hour very nicely. This time, we waited....and waited. We finally were taken to a room, a small exam room, where we waited a bit more. I mentioned to my MIL that they always put us in there, then they realize they need to put us in the microscope room because that's the only way to see in her tiny ear canals. Sure enough, they moved us to one of the microscope rooms and we waited a bit more. I realized it was 9:45am, and we still hadn't seen anyone!

Just a minute later, Miss C came in. I let her know right away that we were supposed to be at our next appointment in 15 minutes downstairs, and that we'd waited over an hour already. She apologized and said we'd get there on time. I gave my same speech as always... She has had no ear infections. She's not been sick. She hears very well. Her speech is good. Her therapists are very comfortable that she's hearing clearly due to her speech patterns. We have no concerns. Miss C then looked in her ears and had us put her on the big chair for the fun part. Braska hates being held down and still, so when three people are holding her head and body and putting something in her ear, she's not happy. She did relatively well, but Grandma C sure didn't care for it at all. They cleaned out her ears, got a good look, and said we could go on to audiology. It's now 5 minutes til 10 and I told audiology we'd have to come back later in the day between appointments because I wasn't going to be late for the next one. And we headed back to the 2nd floor.

Down Syndrome Center: This is always the most pleasant part of these days. I just love Alison, the nurse practitioner who handles scheduling all our appointments and also sees us every other visit. Dr. G is the doctor who sees us in between, and she's great too. It is SO SO nice to see providers who KNOW about DS inside and out and deal with us as such. Of course, I mentioned to my MIL as we sat down at 10am that I'd never waited more than 3 minutes at this clinic. Again, I was wrong. We waited about 15 minutes, but it was more enjoyable as there were some absolutely adorable kids running around in there!! Just too cute. I stared and watched them play, I admit it. One particular little girl with pigtails was totally mesmerizing. I guessed her to be 3, and I later found out I was right. She would climb up in a chair next to someone else in the great big waiting room and smile and say hello. She could chat with them, and smile and giggle, and they just couldn't help but engage with her. SO adorable.

Anyway, we got called back and here it was...the moment I was waiting for...the weigh-in. This scale is the "official" scale in our world. Most of our specialists at Children's use the same clinic space, so we often utilize this same intake/weight area. So it has been our consistent measure. I had high hopes of her hitting 20 lbs since she's now 2. So I stripped her down, including her socks and her hair bow, diaper too. And when the numbers stopped changing... 19 lbs 10 oz. Arrrggghhh! Nope, didn't make it. I'm not actually sad or anything, I just really thought she was gonna be there. So we shrugged and went back to the room. Silly little tiny girl!!

Cardiology: This is inserted here because Dr. J comes to the room while we're in the DS Center. That is so nice, in my book. What a perk. We go to one room and see two docs. Love it. Dr. J is wonderful and has followed Braska since she was discharged by her surgeon after her surgery in Spring 2007. He listened to her and said she sounded great. We chatted about how she's been and he was pleased with her size and weight gain on the curve. He wanted to do an echocardiogram since it had been a year, and that was expected. He left and said he'd check in with us after the echo as usual.

(Back to DS Center) Dr. J left and Alison came in. I just can't tell you how much we like her. From both my parent perspective and my practice manager perspective, she is great. She sat down and we had a good chat about how Braska's doing, what we are working toward, if we have concerns--which we don't--and what's next. She's very thorough and not rushed, and that's nice. She examined Braska and we discussed what labs she was due for today. She wrote out the order and recommended we wait to draw the labs til later after we'd seen the other docs just in case someone else wanted more tests so we only had to draw blood once. Good call. My normal brain would think of that, but this pregnant brain of mine...good reminder! She asked me to email her some things and would respond with a pediatric dentist name and such. She's great with email, which makes her way up there in my book! Then she walked us down to the echo lab so we could get that done.

Echocardiogram: We didn't wait too long, and there was no one else in the waiting room, but it was about lunch time, so that always means staggering staff availablility. The guy who did our echo was really nice and very cool with Braska. She laid so still and was unbelievably good for the whole thing. I read her a book at one point to keep her distracted, since she wasn't interested in the TV. Mostly, she just watched the colors on the echo monitor and hung out. I am so darn fortunate to have such a cooperative little girl! The echo tech heard me say that I hadn't eaten yet in the day and needed to squeeze in a trip downstairs to the cafeteria before heading to our next appointment, so when he came back to tell us Dr. J was on his way, he brought me a little yogurt. Isn't that nice?? I thought so. Dr. J came in, said all looked good on the echo and the EKG. Both are not "normal" but they are good for a kid who has had the heart repairs that she has, and that's what we want. We don't have to see him for another year unless we have questions or problems. Very nice!

Ok...I have to pause for now... part 2 will be along soon. Still to come: Eyes, GI, audiology, and lab.

Monday, November 24, 2008

Birthday balloons

We've been really busy so I haven't been able to show you my other birthday pictures. Here's a little movie of me playing with the best toys Daddy ever got for me! I still have them on the floor because I like them so much!!

Tomorrow I'll be gone to see lots of doctors all day long with Mommy and Grandma C, so I'll try to put up pictures later this week.

Friday, November 21, 2008

Quick birthday pics

I had a pretty good day, even though I started to feel sick a little in the afternoon. My nose is getting all runny. I think I caught Mommy's ickiness from last week. I hope not.

I'll put up more pictures later, because we took a whole bunch! But I'm really tired, so it's time for bed. Here's just a couple...

My favorite present was from Grandma C and Grandpa J. An Elmo chair!! I sat in it almost the whole night!! I'm gonna love watching Elmo in it tomorrow!


And I had SO much fun playing the balloons that Daddy got for me and put all over the floor. They were the best!! I am gonna play with them more tomorrow too, but I have to go to bed now. It was a fun night, and I laughed and played more than I can remember ever!

Makin' my cake

This morning Mommy and Daddy sang a silly song to me because it's my birthday! They sounded silly since Mommy's still a little sick and Daddy just sings funny all the time. I'm 2!

I helped Mommy make the cake for my party tonight. This is the first time I ever got to make a cake, so I had to look over the steps on the box.


Then we mixed it all up.


Now it's in the oven...and it's smelling yummy!

Happy 2nd Birthday from Mommy

Two years ago, 11/21/06, 2:27 am. Welcome, Nebraska Larae.

Our first family pic, about 15 minutes later...when I met her face to face for the first time.

It seems so surreal to look back at that picture.

I feel like I should have alot of stuff to say about this birthday thing, but I don't. I could go with the "we've learned so much" and "we're so blessed"--both of which are true--but I should sure hope that you know that by now!

So I have no wise, moving, and memorable speech about Braska turning 2. We've enjoyed these two years, and we look forward to this new one and the many to come.

In case you haven't heard the REST of the story of Braska's entry into this world, you can click here and here to catch up.

Wednesday, November 19, 2008

Mommy report: Chatty girl

Braska's been just loving her words lately. She's still signing some, mostly when we're in public or around strangers, but she's adding more words all the time. Many of her words are just attempts at the actual word, but that's where we all start, right?!? We're not saying that she'll be giving speeches next month, but we are very proud that she's become such a mimic and that she is loving using so many sounds.

We practice often, just running through her words, signs, and tricks. She especially loves to chime in with videos of herself, so I've been working on compiling all her favorites for her to work with. As I was editing this, she was sitting here saying the words over and over. So funny to hear her talking to herself on the screen and loving it.

So here's a peek at some clips from our practice session tonight. Some words are more obvious than others. They are all great attempts, though, and we'll celebrate that!


Tuesday, November 18, 2008

Beds and stuff

I've been trying to help Mommy feel better by playing nice lately. So I haven't been putting up pictures as often. Here's some fun ones that we've taken lately though.

Mommy found me sleeping funny again the other morning when she came to check on me. I don't remember how I got this way.


I helped Mommy take the pictures off Kinlee's walls. It came off really easy. I was a good helper!


Daddy took me and Mommy out to dinner last week for remembering their wedding day 8 years ago. I got all dressed in a warm outfit because it was cold!!


Saturday night Amber and Katelyn came to play with us again after we went to dinner with them. They brought me a whole bunch of toys!! Isn't that nice!! I really like them and they help me practice my standing. Thanks!!


I gave Kinlee my bed, because Mommy said if I did, she would get me a new one. This week I got my new bed, and it's super cool! It even has neat ways to change when I get to be a big girl. I love it!


And I helped Mommy get Kinlee's room ready with my old bed in it. I tried it out to be sure it was cozy. I even took a nap in there to be sure she would like to sleep in it.