Braska Bear

No matter that the table is a plastic one meant for outside or that the "big screen" is the Nabi... Still a delightful experience to enjoy a show with a meal. Clam chowder for B and pb sandwich for K go wonderfully with Wild Kratts.

First, just watch.  Really. If you even know an inkling about Braska do NOT miss this. I won’t say much, as I don’t have time to share the whole story.  But here’s the highlights. Last Friday, new eyes on B for a behavioral feeding consult. New protocol given. For the last 7 days, we’ve rearranged pretty much everything to abide by the new protocol (including 45 mins 3 x day for focused work).  I admit I’ve missed a couple I just couldn’t figure out how to avoid. Today at lunch she did really well eating her little tiny squares of graham cracker. So I thought it wouldn’t be to far a jump to cheerios. She was watching Sesame Street this evening, and I handed her a cup of milk and a little cup of cheerios and told her to practice her crunchies. It took some prompting, but she took one each time, chewed it, and kept it in. Read that one again right up there….  that is BIG in our world!  HUGE!!!!! So I had her sit up where I could get v...

(Mommy note: This is the last post for today, but please note that we caught up today, so don’t miss the several posts that are below, especially if you’re getting this via email!  Thanks for your patience as we caught up!) This is what KiKi had tonight for dinner.  She’s so good at eating healthy things. When she wants to. Sometimes.  But these are some of her favorites! My food is all mixed up, because I usually eat soup with all my meat and veggies in there.  It’s not as pretty to look at, but I eat it up really good!

Mondays are busy around here.  First I go to school.  Today, Mya came to feeding with me, and she helped me.  She is so good at teaching me new stuff.  Everybody should get to have a friend like that. After nap, I go to swim with Miss S. After swim, I get dried off and we pick up KiKi and Daddy so we can go to cheer!  Tonight I practiced climbing up and standing tall with my coaches.  The first time, I did a little better by doing my high-V instead of just holding on to them. And then the second time, I did even better!  I let go and did a high-V way up on top! KiKi likes to do the big stand-ups too.  Here was her first one tonight… And here’s her second one, when they went all the way up!! See me there at the bottom looking up at her?  I am not ready to be up that high yet, but yay for KiKi! After cheer, we go home and go to bed. It’s a full day!  Monday’s are fun at our house!

Mommy note:  Tonight as we were leaving the in-laws’ house at about 9:45pm, I heard an “Uh-oh” and turned around to see PaPaw holding Braska button.  It was not attached to her.  We all kind of paused, I said flippantly, and half joking, “Well, I guess we’re going to be done with that now.”  I then quickly had anxiety start creeping in.  Over the next minute or so, quick conversations happened, and M agreed that we were probably ready to just let it stay out.  We were 45 minutes from home, had no supplies with us to reduce the balloon (which was still intact, weird as that always seems to me) and put the button back in, so we had to make some decision pronto.  Break the balloon in order to get it back in and hold the stoma open---but we don’t have a back-up button at home---OR just call it done and move on. I called our nutritionist right then, not realizing until it was ringing that it was 9:45pm.  After a quick chat with her, and her assuran...

It’s very late and it was big day, so here it is quick! After school, we had a special lunch at Chimi’s and Daddy got to come meet us there too.  It was fun! After Daddy went back to work, we finished up our lunch.  Mommy was giving me drinks and decided to let me try to use the straw again.  And I surprised her BIG!  I got drinks with the straw!  That’s new! After we got home from lunch, it was time for naps. We had to rest up before out big party tonight!!!  I got to bring Jingles home for the weekend. He’s our class pet at school.  I get to do stuff with him and write about it in my journal.  Of course I want to show him to you too!  He tucked me in for nap… KiKi had to take a turn with Jingles, too, of course.  She thought he was cuddly. Tonight we went to Jump4Fun for a big party with all my friends who are “extra” cute like me.  I took Jingles along to show him how fun it is there. We had SO much...

Today Mommy didn’t have to work!  And since Daddy doesn’t have to work on Saturdays, we really had fun with our work-free day!  We didn’t have dance class either, so we found some other fun things to do. We had breakfast with Miss Linda and Mr. Gary at a new place.  Everybody thought it was funny that we went there, but it was yummy food and Mommy liked that it reminded her of when she was a little girl. This was Miss Linda’s first time, and Daddy and Mr. Gary had been there once before. Mommy has been there lots, but it was a really long time ago. I ate something called grits and they were GREAT!  I ate almost 2 bowls of them.  Yum! We even danced around to some music.  Breakfast with dancing is the best, you know. After breakfast, we went to Aldi to get some food stuff, then we went home and Mommy made a bunch of veggie soup for me to have this week.  When it was all cooking, she took us to the Y to play basketball and run...

I feel it’s only fair to provide full disclosure, to clarify where we’re at with feeding.  Jennie left this comment on a recent post … Tears in my eyes seeing her eat a snack... just like everyone else. Someday... And because I know that feeling so well, I don’t want to mislead those of you who are somewhere on this feeding frustration journey. Braska is progressing GREATLY, when we look at the big picture.  If you saw this pic , you can see something huge even if you don’t see the following few seconds.  She has a cookie in her hands, and of her own free will, she has it in her mouth, between her teeth.  That, by itself, is amazing.  She has come a long way to get to that point. But she didn’t eat the cookie.  She probably closed her teeth on it just a bit.  But she didn’t actually break the cookie off in her mouth.  She then set it down and was finished. So while we celebrate where she is, we know we still have a long way to ...

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/...

Tonight we wanted to take a bath.  KiKi kept asking to take a bath, and Mommy asked her why she wanted to take a bath so badly.  She said, “I’m really dirty, Mom.  I need a bath because I’m dirty.” Then I said, “Yeah. I’m dirty, too. We wanna take a bath pleeeeeeze!” Mommy said she didn’t know if we were really all that dirty, but it was ok if we wanted to get in the bathtub for some splashing fun.  So we took a bath. We even got to turn on the water bubbles that splash around. Mommy said we didn’t seem all THAT dirty, but baths are good even if there’s only a little dirt. And then it was bedtime…  OH, and guess what?!?  I drank all my milk again today!  That’s 4 days with no milk in my belly tube!! I’m getting better at drinking good, too.  YAY!

Yes, I’m ready to say I’m counting now.  Days tube-free. THREE. Actually, close to 4…her last tube feed was Tuesday breakfast. But let’s not get too picky. I’ll just count full days.  Pardon my excitement. She did great again today.  Though she did fight a little this morning in both eating and drinking.  Just was in a grouchy mood for a while.  But we managed. We took breaks and she got it all in. Daddy even covered a big part of that tonight… so it’s now a team effort, and that’s good.  Her total today was about 21 oz today, I think.  Possibly a bit more.  Go Braska! Also today we had her 3-month check up from her May strabismus surgery.  Her results have been great, and we are all pleased.  In that time, though, her tip/tilt has become more consistent and defined.  This was kind of expected, in that when we fixed the crossing issue, the true nature of her nystagmus issues and the related accommodations showed up.  This...

Short and sweet. Braska has had no tube feedings since Tuesday morning.  None on Wednesday, and none on Thursday.  She had 20 ounces of fluid yesterday, and about 23 today.  All oral.  Hard to believe, even though I’m right here for all of it. It’s a struggle, but she’s showing improvement each day.  She hasn’t asked for “milk in my belly” at all, a favorite request of hers.  I’m exhausted, but it’s ok.  Though the effort required of me at each feeding/drinking encounter multiplied greatly versus the super simplicity of the g-button, she’s the one doing all the work.  It is really hard for her, but she is managing like a champ. Practice practice practice. Drink drink drink. That’s what’s on our schedule. Oh, and tomorrow morning is our follow-up appointment from the May eye surgery. Expecting to plan for the date of the next one.

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...

Kids eat. Kids drink. That’s what kids do. It’s built in. They just know how. But mine doesn’t. Well, one of them does, but the other one, the older one, the way-tiny-for-her-age one doesn’t. (We will find out tomorrow if we’ve made our summer goal of 25 lbs! It’s going to be close…) She’s been in feeding therapy for over 4 years. She’s made progress. Lots of it. But it’s VERY slow going. But this isn’t about that. (If you want more details about our feeding journey, please feel free to ask. I’m happy to address particular questions.) We’ve been working on Braska’s oral liquid intake more diligently since the spring. The team initiated offering frequent drinks during her school day, between each activity, trying to increase her oral intake. She is up to about 3.5 to 4 oz a day (9am - Noon each morning). That’s a very VERY big improvement from a year ago! She only takes sips, like a mouthful at a time, (from a sippy cup with no valve) then she has to let go of the cup and...

Today we went outside to play for a little while.  It was still in the morning time early when the sun isn’t too hot.  Me and KiKi are feeling a little bit better.  Mostly KiKi is feeling better.  I still don’t feel very good, but I thought it would be fun to go outside and play a little.  Mommy said the fresh air outside might be good for all of us.  I didn’t know that fresh outside air could be like medicine, but it sounds like better medicine than the other yucky stuff I have to take.  We did some swinging, and some sliding, and more swinging.  We LOVE to swing a lot.  Mommy pushed us for a long time, but then she got tired of pushing.  She keeps trying to teach us to do up and down with our legs and swing ourselves, but it’s way more fun having her push us up high!  She brought our jumper outside, too, and we played on that for a while.  KiKi is really getting good at jumping pretty high.  I like to hang on to th...

(For those of you who skim, there’s a video at the bottom with some speech fun, if you’re into that kind of thing. ) Yesterday we did some fun things that also made me work hard with my hands. First we got our stuff together that we would need.  And we got excited! Then we counted a little and put the squares on the pan.  They were a little sticky. Then we put the squares in the oven.  After the squares had turned into to cookies in the oven, we came back and got ready to put frosting on them.  Mommy didn’t want us messy, so we did frosting with naked body. KiKi started first.  She put her fingers in the cup Mommy gave us that had frosting in it, then she put it on her cookie. Like paint.  She did a pretty good job.  And she even licked her finger and said it was “YUMMY!” KiKi showed me how to do it.  “Stick your finger in the frosting, Braska.” ”Well, this is not fu...