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.

Monday, November 17, 2008

Go Vote for Kayla!!

My friend Kayla is a finalist in a contest of pictures. She is SO pretty! But this picture has her kind of messy and fun! Kayla's blog was one of the first ones I saw when I was a tiny baby, and then I made my own... so Kayla's one of my extra special blog buddies. Her daddy is going away again soon to help our country be safe. If they win, her mommy and daddy get lots of groceries! That will help her mommy alot while her daddy is gone, so go vote! She's #4.

Yay Kayla!!

Thursday, November 13, 2008

Blue is cool!

I found a new fun show this week. There's lots of singing and dancing, and I like to do both those things! It's got a little dog in it named Blue. And he leaves clues for his friends to find. I like to scoot up close to the TV, so Mommy puts me on my little stool that I use for stand and sit practice. That way I stay in one place.

Tonight's show was really fun and I got all excited!



(Mommy note: Remember, you can click on the pictures to make them bigger. The look on that little face is worth it! :o)

Tuesday, November 11, 2008

Happy Birthday, Auntie Julia!

Today is my Auntie Julia's birthday. She's 13 now!! Getting to be a teenager is a big deal, everyone says. She is Mommy's youngest sister. I looked for some pictures of me and Auntie Julia together, but I couldn't find any! Isn't that weird? But here's some I found.

This is her at Mommy and Daddy's wedding. It was her 5th birthday that day.


This is from last year when she came to visit right after her birthday.


And these are from this summer.


Happy Birthday, Auntie Ju! Hope you have a really fun day!

Thursday, November 6, 2008

October catch-up

This week has been quiet at our house. Daddy had to work alot and Mommy's not been feeling good again. So we haven't been taking pictures. I did find some from October that we forgot to use, so here's a few from the last weeks.

One of our Bears Sundays I got to try out Shay's neat tricycle in Grandma's kitchen. I liked it ALOT!! Shay rode with me a little and then I did it myself.


I've been helping to teach Shay how to say Touchdown and she finally got it!


Almost every week, I take a nap with Miss Cheryl. We take the good chair and get a snooze in while everyone else is watching the game.


I was feeling pretty silly that week and kept climbing up on the arm of the couch to grab stuff that wasn't mine. It got to be a fun game, and Mommy would grab me and I'd giggle and giggle. I also had some yummy stuff that night.


One day we went to look for costumes and we tried out some fun chairs. This one was comfortable but I didn't know who that girl was on the chair. Mommy said she might get me one so I have a place to sit and watch my shows. I don't have one yet though...


Mommy put up a thing so I can't get in the kitchen sometimes. It's really hard to get it out of the way. So I just stand there and wave at whoever is in the kitchen.


I love to take baths, and I ask for them everytime I can sneak into the bathroom. Baths are lots of fun!!


On Halloween day, I went to see Daddy at work, and we went all around his buildings downtown. We visited lots of people, but the camera quit working so we only got one picture there. You can see it over on Daddy's page. Here's my smiles from before we left to see Daddy. Now we'll save the ducky for next year when Kinlee can wear it.