Braska Bear

It’s been about 2 years since I had to see Dr. J, my heart doctor.  I was so strong and healthy that he didn’t have to see me for a while.  But today it was time to go see him again and take a little test.  First they checked to see how big I was.  30 lbs 7 oz and 38.5 inches is what they said I was.  Mommy thinks that’s big.  Everyone else seems to think it’s little since I’ll be 6 in a couple weeks.  I say it’s just right! Then I talked to one new doctor. He was nice but he wanted me to lay on my back so he could listen to me. And I do NOT like to lay on my back at all.  Mommy is stronger than me, though, so I couldn’t get up even though I wanted to.  It was over quick, though. After him, we went next door to see Mr. Jim, and he gave me a couple tests.  One was EKG and it had lots of cold sticky things on my skin. I didn’t like that.  And since I don’t like to lay on my back, Mommy sat down first and then I leaned back on ...

Back when I was a tiny baby, I used to have to get on that silly scale over and over and over and over.  A lot.  Doctors always wanna know how big I am, so they have to check all the time. Today Miss C came over to check on me and see how good I’m doing with my eating and drinking.  And of course she always brings a silly scale with her. Mommy used to take pictures of me every time on the scale, and there were lots of scale times… like here , and here , and here .  But she hasn’t done that for a while. So she thought it was about time for another one. And do you know what the silly scale said?? 26 lbs 2 oz.  A new high!!!  And I’m 36 3/4 inches tall, too. ( Mommy note: I’ve talked before about my feelings about growth charts …  But since some of you like to know how the comparison looks, I’ll humor you.  I’m feeling generous today. On a typical growth chart, she doesn’t even show up. 5th percentile for typical would be 32 lbs 39 1/...

What Braska looked like (pretty close anyway) the last time she had a fully tube-free day…..  April 2007.  (And those tube-free days were hurting her, dehydrating her, though we didn’t know it at the time… but no more!) Clearly, that particular day wasn’t tube free.  Man, I do NOT miss that NG.  We don’t mind the g-button at all, but that NG tube was a pain!  In the picture above, she weighed 10 lbs 8 oz at 4 months old.  She was weighed again today by her nutritionist… and we met a new goal !  Anyway, I’m beat from a long day, but I couldn’t miss documenting today’s victory.  After our big celebration yesterday of record-demolishing totals of oral intake, I had hopes that we would get to the point that ALL her fluids in the day could be covered orally… but I didn’t think it would be now. Today she took in over 20 ounces of liquid, (mostly milk, some juice) via sippy cup or open cup.  She also handled her calories,“entrees” as I cal...

Today Miss Cathy came to see me.  She helps me make sure that I’m eating good healthy things and getting enough cal-lor-ees.  She has one of those silly scales that I have to sit on to see how big I am.  My new numbers are bigger than I’ve ever been!  The scale said 23 pounds 4 ounces today.  And I was 33 3/4 inches tall!  Woo!  I’m getting bigger! Mommy says I still got alot of growing to do, but it’s good that I’m trying hard.  My jeans have not been fitting me very well lately because my belly is getting smaller.  (And I don’t really have a belly anyway!)  I even had to change my pants at school today before Mommy left me for the day because my jeans wouldn’t stay up.  Ha!  I had droopy drawers, Mommy said. Me and KiKi can wear the same pants, but KiKi is a little shorter, so I need my pants to be a little bit longer.  But when we wear our summer clothes, we can wear the same ones.  Isn’t that funny??...

Dishes, showering, laundry—all on hold. I just can’t keep putting off an update on this girl or I’ll forget all this before I can get it down. Since this is my main record of Braska’s goings on, it’s important at this stage. We’ll start with feeding, and there will be at least a few other categories to follow soon. To refresh for anyone who might be a newer friend here on the blog, Braska doesn’t eat orally, not regularly, never has. She has a g-tube/button, and she gets all her nutrition via Pediasure through her button. She has no medical issue that causes this problem. This is not a “Down syndrome thing.” She chooses not to eat. She does not show hunger or thirst, and she couldn’t care less if she eats or not. This is a behavioral issue. Even with our ability to feed her without her help, she still has always been underweight. At 34 months, she is just under 22 lbs. Because her weight is low, we cannot do more stringent caloric challenges (holding back on nutrition/food/milk, causin...

Mommy likes me to keep track of how big I’m getting, so she wanted me to put it on here so she won’t forget. Yesterday we went to a place and they checked to see if I had gotten bigger.  When they put me in the little chair that tells them if I’m eating good, it told them I was 22 lbs.  That’s really big!! I think that’s bigger than I’ve ever been before!  And then they made me lay down on this big hard thing to see how far down my feet went.  I did not like it at ALL!  But when they let me get up, they said I was 33 1/2 inches.  I think that’s good, but I’m not sure. Anyway, I’m with Daddy and KiKi at Grandma C’s today so that Mommy can have some quiet time at home.  We’ve been kind of hard on her this week, and she was asking us to start being good girls again…especially KiKi.  She was really bad.  I’m the good girl, don’t worry.

Now that we are in St. Charles, we've been doing regular stuff again. I'm hanging out with Daddy some when he comes home for lunch and after work. Monday we went to Uncle Ethon and Miss Cheryl's house. It's nice to only have to drive a little bit to see Grandma and Grandpa and the uncles. We even get to go back home the same day! I wasn't so sure about everyone, so I sat with Mommy most of the time. I did play on the floor some, and I liked watching when they were playing games on the TV after dinner. Today, we went to see Dr. G at the DS Center. She's always so nice. We got to see Miss Alison too, and she always helps us with stuff to make sure we're all taken care of with my other doctors. It was so neat to go to the appointment and be home by lunch time! First I read my book a little while we waited just a minute for Dr. G. They took me to the silly scale too, and I'm 18 lbs 7 oz now. Dr. G looked me over and said I was doing really good. She said my ...

Tomorrow I'll be 18 months old. I think that sounds pretty grown up. Since I'm having that birthday, I went to see Dr. Y last week on Thursday so he could see how good I'm doing. We won't get to see him anymore since we're moving to St. Charles. That's kind of sad, because he's a very good doctor for me. I got on the silly scale again. It said I weighed 18 lbs and 1 oz. 18 pounds and 18 months! Dr. Y said I really need to try to gain some more, but I think I've got enough on me for now. Otherwise, he said I was doing really good. Miss Courtney gave Mommy a package of all my papers from there, so we can take them to our new doctor. On Saturday, lots of people came over to help us load up a big truck. It was like people all over and they kept carrying our stuff around. I just stayed out of the way and played by myself. I thought they might accidentally put me on the truck too! Mommy even had to go get another truck so they could load it too! O...

Today went pretty well. Mommy and I went to see Dr. R, and he said I looked good and my button does too. I got to talk to some nice people in the waiting room. I like to sit up big in my stroller and say hello to people. The nurse put me on the silly scale, and I've gotten a little bigger. 17 lbs 2.8 oz and 27.5 inches. Tonight we went out to dinner with Grandma C, Grandpa J, and Uncle Ethon. It was a fun time at a place kind of like El Toro, but I didn't eat anything because it wasn't the same. I did talk to Uncle Ethon and tried to show him what I wanted him to order. And I played with Grandpa J too, standing up big and sitting down again.

It's been an icky week at our house. Daddy has been sick since Tuesday, like he can't even hardly wake up for long before he's sleeping again. He doesn't look so good either. I haven't got to play with him or get any cuddles since he got sick. Mommy is trying to be sure I don't get anything. Last week I was a little warm a couple days, but Mommy says it is probably because I'm working on more teeth. Then I had the night when we had to go to get the test done . Then after I got back from my trip to St. Louis last weekend, I started getting warm again. This time Mommy says it was 101. I don't know what that means, but I didn't feel very good. I tried really hard to be a good girl even though I didn't feel good, I did my therapy playtimes and everything. Mommy said I did a good job and didn't seem too sick. On Wednesday, Mommy saw some spots on my belly, and then they were on my back and my face too. It is kind of hard to see them in pictures, b...

Sunday I got to wear another new dress. This one is from Mommy's Aunt Chris and it's been in the closet for a long time since I'm kinda small. It says 6M on the tag, but it just now fits. Mommy says it's good to be petite sometimes, so it's ok. Thank you Aunt Chris! Monday morning Miss Judy came to see me. She brought some new things for me to do. She had this tray with some rolley things on it, but I liked the tray more than the rolley things. She wanted me to pick them up, but I just pushed them out of my way. Mommy took some movies of me playing with Miss Judy. It's kind of long, but it's mostly for the grandmas anyway! Ha ha! They don't mind long ones because they like to see me play. After Miss Judy left, we went to see Dr. Y. I looked at my book while we waited for him to be ready. He has a new nurse, Miss Maria, and she put me on the silly scale. I was 16 lbs 8 oz, same as a couple weeks ago, so that's good. I didn't go down any...

Mommy and I went to St. Louis again yesterday for some more doctors and stuff. We left very early in the morning. This time, we went to a different place than where we usually go. We went there because they have a big place just for kids like me that are little but need glasses to see better. Mommy told me that when I get my glasses that I will see all kinds of things I don't get to see right now. I'm not sure how that works, and I don't like when they put the glasses on my face to try them on, so I don't know if I'm gonna like this thing of wearing glasses. First we went to St. John's so we could pick out my glasses. Miss Mary helped us, and she was very nice. Mommy put some of them on my face, and they kind of make my nose feel funny. She decided which ones she liked, and I told her they were my favorite too. And guess what color?? Pink, of course! We will have to go back and get them in a couple of weeks. I sat like a big girl while Mommy was paying for every...

I went to see Miss Lynn at Dr. Y's office today, and she put me on the silly scale. Guess what? I finally made it over 14 pounds! Mommy was hoping I would get to that before I have my birthday, so she was happy. (14 lbs 2.5 oz) Since it's been kind of cold here the last couple days, I got to wear a new outfit that Auntie Rachel got me. It has a jacket and everything. I must have been looking super cute because Mommy took a whole bunch of pictures while she was trying to get me to smile. I finally gave her a nice one since she was trying so hard. And here is a little movie thing too, especially for all my family far away. Mommy and me had lunch with Miss Sara and Ali P today, and we also worked outside on the pool for a while. It takes a long time to close the pool since I can't help Mommy, so she has to do it by herself. I think we're gonna get it finished tomorrow, so I'll get to bundle up in warm clothes and go outside and watch her. She says these are da...

I'm sorry it's been a while since I put up some stories. I've been a little busy, and Mommy's been so busy that she hasn't taken any pictures. I need to learn how to use the camera, she says. Monday Miss Judy came to see me, and she said I looked so much better than last time she saw me. I've got some new tricks that she hadn't seen, like reaching up for toys with both hands and grabbing onto new toys. I even showed her how I can put stuff in my mouth, but I only like to do that with things like bibs and shirts and blankets, not hard things. Miss Judy didn't make me work very hard, she mostly just watched me and played with me a little. Tuesday Miss Robin came, and she made me work. She always does, though. We practiced rocking a little, that's when I look like a little dog with my hands down to hold me up and Miss Robin holds my legs in so my knees hold me up. I kind of like this lately. I didn't like it before, but it's not so bad now. Momm...

I went to see Miss Laurie today to see if I'm any bigger. And I am a little bit! Mommy took me with her to another hair place, and they did some weird stuff to her. It also smelled really funny in there too. I kept getting tickly nose and Achoo's came out of me. While Mommy waited for something, I got to play on the fun chair with her. And there were lots of lights to look at too. Mommy looks kind of silly though. While Mommy was getting her stuff done, I played with a new doll that I got in the mail today from Mommy's cousin Melani. Aunt Chris sent it to us. I like it a whole lot. Thanks a bunch!!! Tonight I did some extra smelly stuff and Pop had to make some funny faces while he was cleaning me up. I pulled some tricks on him too. Just when he thought I was all clean and done, I made a little more mess. He was laughing and squishing his nose up at the same time.