Braska Bear

From September 10, 2007. The day the PEG procedure was done and the g-tube was placed. From November 15, 2007.  The day the first button was placed. Today was all about checking to see how the stoma was doing.  And really, we didn’t need to do it at all.  There has not been one single drop of leakage since the button came out last night.  Now THAT is a recovery process I can enjoy!

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...

Real quick, because I’m tired and really want some sleep. ~Braska has gone 7 weeks now without using the tube. That’s big! ~Braska’s button is not out for good.  It’s been returned to it’s proper location in the belly. ~The button had been looking loose, and instead of actually checking the balloon and/or adding water to make it more snug, we just kept saying we needed to do it. ~When she woke up from her nap yesterday, she emerged from her room button-less.  We scrambled to find it and then decided to try to put it back in even though it had likely been over an hour since it had been out. (The openings can often start closing within minutes.) ~We do not have a back-up button currently.  Just figured we’d make it through the remainder of our time with this one. ~The button was located and after quite a bit more effort than we’re used to exerting, Daddy got it back in.  ~I had resigned to the fact that the pressure was SERIOUSLY now on us to keep up ...

October is Down Syndrome Awareness Month. So we’ll highlight a few little special things about what DS means in our house. [I have Down syndrome. Sometimes I surprise my Mommy and Daddy.] Oops… notice anything here??? Or not here??

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...

It’s late, I’m tired, and today was a struggle with my tiny little stubborn one when it came to eating.  But we got through it.  We have a new tentative plan, of sorts.  I’ll share about it tomorrow, hopefully. The bottom  line is she is making progress, and we’re going to celebrate that and start our “new normal”… another one…tomorrow.  Hopefully we’ll continue to see consistent improvement in the months to come.

Yesterday went pretty well overall. At dinnertime, Braska was not much interested in taking anything. It took alot of prodding to get her to take her soup (vegetable beef soup, condensed, with only a slight bit of milk added to reach the right consistency. Pulsed with immersion blender.) but she got it in. The oral milk intake was even more of a challenge. She ended up taking about 1 ounce before I gave up. For the whole day she got 31 ounces of fluids in, 5 ounces of whole milk orally and 26 ounces of the "50/50" Pedialyte/water mixture. The poor girl was going through diapers like never in her life. And she didn't really care for all the action her body was experiencing. She seemed uncomfortable, but not really unhappy. Of course she woke up this morning in a totally wet bed, wearing completely wet PJs. That's the first time that's ever happened, with only a couple previous experiences of ANY diaper leaks at night. And she generally has 8 ounces of Pediasure rig...

Under the supervision of Braska’s nutritionist, we are attempting a 3-day wean from nutritive support via her g-tube.  This DOES NOT mean we are ready to be done with the tube, not by a long shot.  But it does mean that she has made some very good progress. I’m going to document some here because I know some of you are in a similar boat with feeding issues and tube feeding.  If you have any questions, let me know. We started this morning, and the key changes to how life will go for three days are these… Braska gets nothing in her tube except a 50/50 mix of water and Pedialyte. Nothing of actual nutrition. Just fluid support. It’s all on me to be sure our schedule is open enough to allow for time to sit at the table and work on as much oral intake as possible.  We get one shot at a wean as authorized by the school district via her IEP. No pressure. We will be tracking every single mL and calorie that she takes in, and the nutritionist sees her each d...

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...

Yesterday Mommy and me went to Children's Hospital to see my buddy Sophie. She came down to have some appointments with some of our doctors. (It's pretty fun that we have some of the same ones!) Guess what floor we parked on this time?! We've never been this high before! We had some lunch after she got done with having her ears checked and before her seeing our eye doctor. Miss Jen went to get some lunch and I helped Sophie get her snacks. She tried to give me one, but I just let her have them all. After lunch, my second belly button started to leak and milk was all over me. Since we were right there where my belly doctor is, we went to see them. The nice nurse looked at me and helped us clean up. We found out that my button isn't quite working right and leaking a little, so I'm gonna get a new one. They didn't have one there, so we had to order it. We hope it's coming tomorrow. But isn't it nice that we were right there in the big hospital w...

On Sunday Mommy was feeding me my vanilla milk when she looked and saw that I was sitting in a big puddle of milk in my chair! She put me down and Daddy looked to see what was wrong. The milk was coming right out of my second button where it's supposed to go in. After they checked it out, Mommy decided it was time to put in a new button, so Daddy got the stuff and the new one, and he made it so it was ready to pull out easy. Then just like that... Daddy took it out! There was just my belly left with a little hole! Mommy held my hands while Daddy was working on me, and he put the new button back in. I've had the same button since I first got it last year, so this was the first time we changed it. But it was really easy and it didn't even hurt. When Daddy got it back in, he put water in the little balloon in my tummy so that the button stays where it's supposed to be. Look, all done. New button! And I never even got sad face. Just talked to Mommy while Daddy ...

I went to see Miss Vicki on Monday. She's the nurse for Dr. R who takes care of my second belly button. She said it looked ok, just like that gran-u-lay-shun stuff that came back in January . That comes and then goes away sometimes. But it's hurting me so bad this time! Before it didn't really hurt too much, just got big and yucky. When Miss Vicki looked at it, it didn't hurt, so she said it was ok. But these last couple days it's been hurting bad every time Mommy tries to clean it good. She has to call Daddy to come in and help hold onto me so I can't make her stop. But the blob is getting smaller, so maybe it will feel better soon. Miss Vicki said we needed to let it get some air sometimes, and the only time Mommy said it was safe to do that was when I was sleeping with her to make sure I couldn't mess it up. So I got to take a whole nap on Mommy so she could make it get air while I was napping. The last couple days we've been playing in my new tiny po...

Mommy and I got home from St. Louis this afternoon. We had a busy few days there, but it was fun too. We did have alot of car trips, so I'm glad we don't have to drive more for a couple days. On Wednesday, we left Pop and Belle at home and Mommy and me went to St. Louis. First we went to Auntie Rachel's house and then went to get some dinner with her and Mr. Patrick. It was a fun dinner, but I didn't want to eat anything. Auntie Rachel tried to get me to eat some ice cream, and she sneaked it in on me! It was very cold but kind of good. Mr. Patrick told me some stuff he said I needed to know about life, and it's just our secret! I'm not telling! After dinner, we went back to Auntie Rachel's and I took a nap on her because she was cuddly. Then we got back in the car and drove down to Grandpa J's house. Grandma C was gone on her trip, but I got to see Grandpa J for a few minutes. It was my bedtime, so I couldn't play long. On Thursday, Mommy an...

I just took her back, laid her on the bed, and held her hand as she breathed the sleeping air. She did very well, and dozed off. I don't expect it to be but a few minutes til they're done. Technology is amazing. Wow...as I typed "amazing" the doc came out and said they were done. That's a total of 8 minutes. CRAZY!!! Gotta go help her wake up.... yay! It's done! That was SO easy!

That's what Mommy told the doctor this morning about this thing by my button. It was a really quick visit, and they said they could do it. We get to stay here in St. Louis today and tonight then we'll go back to the hospital tomorrow for them to take this thing off me. Here's Mommy's part of the story... They had said when we were there this morning that they thought they could do a quick Bovie procedure (utilizing electrocautery or electrosurgery ), which is quite simple, with just an inhaled sedative. But when they called back a bit ago to give me the time, 11:30 am tomorrow, she mentioned that after reviewing her history, they'll need to have an anesthesiologist there. I don't know if that means they'll need to do a more invasive type sedation, but I kind of assume that's the deal. The procedure will be the same, either way. They're doing the procedure in the APC (ambulatory procedure center), which is where they did her PEG, button, and a ...

Yes, it's still here. It hasn't gone away. It's not as big as it was, but it has settled in a plateau of sorts and doesn't seem to be decreasing anymore. It's been the same for several days now. It doesn't look as bad, for sure. If you want to see, click here . See? Not nearly as bad as it was . I'm not sure what to do at this point. The GI doctor told me I could call them and they'd set up a surgical excision (removal) of it, which is fine with me, but it means another trip and procedure. I'm debating just giving it more time, as it doesn't really bother her, and I keep it covered in a gauze dressing, so it's not making the mess it once did. I think for now we'll wait and see, maybe for a couple more days or the rest of this week.

First I have to show you what happened to me on Tuesday. My glasses got kind of messed up on my nose. Pop thought it was pretty funny. I couldn't see very well like this though. Mommy and I got back last night. We had a nice visit with Grandma C again. Miss Karen from Kansas was there on Wednesday, so it was good that we got to go down again to see her. She read a book to me. I think we look just the same, both with our glasses and reading the same page. Isn't that funny? Miss Karen teaches kids how to read, so I bet she'll be able to help me alot when I get bigger. Thanks for reading to me, Miss Karen!! I even did some reading myself. Then yesterday we went to see Nurse Vicki and Dr. R. They had already seen the pictures that Mommy sent them, but they were happy to see that the thing by my button was better. Mommy will tell you about that some in a minute. I played with the fun things in the room while we were waiting. The second picture here is when Mommy told me I weigh...