Braska Bear

Here I go. Time for a ride on the bed with wheels....

It’s been 6 years today since Dr. F fixed up my little tiny heart.  I don’t remember it, and Mommy thinks that’s a good thing.  Here’s what Mommy wrote about it last year … there’s pictures there. (Don’t cry Grandma C. I’m ok now, ‘member??) Today, I will remember what I have to do, though. I have to go get my ears fixed so they will quit keeping water and stuff in there when they should let it out.  So I’m getting new tubes in there.  We have to be there WAY early, that’s why I’m up before the sun. I don’t like to go to the hospital, but I’ll try to be good.  Kinlee got to go to Grandma C’s house for a sleepover tonight, and I don’t think that’s fair. Mommy says I can take a turn one day soon. I’ll let you know how it goes today.  I’m used to going to sleep at the hospital while they fix things like my eyes and my ears and my heart and some stuff in my throat. I told Mommy that I just want to stay home. But she said not this time.  I hope they...

We had to go to the hospital today. Except we didn’t stay very long, only a few minutes.  Mommy just had to pick up some papers so she could finish her Turbo Tax.  It’s a game she plays on her computer.  While she was waiting, we checked out the fish.  They have lots of these there, and we like to see if Nemo and Dory are in there.  They were! We went to two more places for papers.  That’s a lot of going around for papers.  But I think we’re all done now.

She is resting well, so far the post anesthesia time has been very calm. So thankful for all the prayers.

All went well, she is one groggy little girl, but Daddy is on cuddle duty.

Here we are again.  I know all these people. They have worked on me lots of times.  They are really nice, so that's the best part. (Mommy says the best part is that they are so good at what they do... But they are nice too!) Soon I will be taking a little nap... Mommy will let u know how it goes. She also puts notes up at www.Twitter.com/mom2braskakiki if you want to see more pictures.

It was a long day.  I slept for most of it though. And now I’m ready for sleep again. You can read the stories before this one to see how things went for me today.  And Mommy might talk some more about it over on her page later too.  But this is how I was when I left the hospital. Looks a little weird. That’s what KiKi said. I slept most of the day after we got home.  Tonight I got up and played a little for about an hour, and I felt pretty good.  But I was asleep again pretty soon. I’m glad it’s bedtime.  I’m ready to see if tomorrow is a little better.

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. I like to look at pictures of when I was a baby.] Mommy’s working on getting all my stories ready to be saved so we can make them a book sometime when I’m older.  And she is working on some from when I was a tiny baby.  Here’s some pictures she found today that she likes a lot.  I like them, too, but I think I’m cute ALL the time!  Which one’s your favorite?? Mommy taking care of me after my helicopter ride to the hospital. This was my sad little face while I was in the hospital not feeling very good. Me and Grandma C. This was one of Mommy’s favorites back then. My first pink polo outfit. Me and Uncle Ethon. And this was when I was trying applesauce at the beginning. It was yummy! I’ve grown a little, that’s for sure!

(Mommy note: She’s still in… just thought I’d share a few more cute pre-op pics. To keep you busy, Grandma C. *wink*)

I got to put on great big pajamas with fishes on them. And I’m working on my letter beads.  Everyone is so nice, and they think I’m pretty funny.  I’ve been really silly this morning because I got up so early. (Mommy note: They took her back about 8:20am. She was the first case this morning, and we expect to hear from them in about another 20 to 30 minutes. She was in great spirits so far, and we are hopeful that the procedure and recovery will go as smoothly.  So many of you have been sending notes and texts letting us know that you’re praying. We do not take that for granted, and please know that we appreciate them very much.  God is good and he will care for our girl, no matter what.  I’ll update more when we can.)

First, if you haven’t had enough sad hospital pictures of Braska, visit the other , the lesser , the more boring my blog for some additional posts about our stay.  Now that we’re home, and she’s in bed snoozing, though fitfully, we wait…  Wait to see if she will sleep soundly tonight. So far it doesn’t look likely. Wait to see if she will take in more fluids/food tomorrow. She did surprisingly well today, though not near her “norm.” Wait to see if the dreaded “painful days,” days 3 through 7, are truth and not myth. I’ve never SO wanted something to be myth. Braska had a few tablespoons of pudding this afternoon as well as some ice cream.  AND a couple of ounces of milk from a cup.  Yeah. Amazing on a good day. Darn shocking today. Tonight before bed, she started to really seem unhappy and uncomfortable.  She gets such sad, pathetic faces when she hurts or feels sickly.  I gave her the first dose of the (very hard to find) Tylenol #2 th...

A little while ago, they said I could go home.  But I had to wait for things to get all done.  So I rested on the couch a little. Then I waited some more.  I’m tired, you know.   Very tired. Then my super great nurse, Miss Amy, came to get me all unhooked from my cords and stuff.  She took my cover off my arm and there was all this weird tube and tape on my arm.  Maybe THAT’S why my arm hasn’t felt very good! She started to take it off, and she did it slow and nice, but it still wasn’t much fun. Then I had to wait just a second for her to get the rest of it.  Almost done. Now she’s working on the hurty part.  I really really really don’t like that hurty part. I tried not to cry as long as I could, but it just hurt too much.  But I only cried a little bit. (This super sad face is ‘specially for Daddy and Grandma C.  You’re both a little tiny bit mean, you know it.)  When we came home, we ...

I woke up and I’m still at the hospital.  I still have this big thing on my arm that makes my hand not work very good.  But I got a little sleep.  Even if I did wake Mommy up alot.  It’s not much fun to sleep in a hospital with a big thing on your arm and cords stuck to you.  This morning I’m just going to relax a little and watch some George. He’s my favorite monkey.  (See my pictures on my bed… this is so I can remember my sissy while I’m here.) (And this one is so my doctors and nurses know what I look like when I’m not icky and grouchy.) (Because this is what I look like lately.) Mommy gave me some more milk this morning in my tube and I didn’t throw it up yet like I did yesterday, so she said that’s good.  If I can do good and keep my milk in me then I can go home later today maybe.  They keep telling me how extra special good I am.  Better than lots of other kids who have their mouth worked ...

Today Mommy’s taking me to the hospital and we’re gonna do surgee.  I’m not sure what that means, but she said she’s going to stay with me while I’m there a few days, so I’m not scared. This morning, since KiKi and Belle are at Grammy’s, me and Mommy are just hanging around at home and getting ready to go.  Mommy was yelling for me after I first got up, but I was already helping her take the trash out. After we got dressed, we had some silly time in the living room while we were watching Sid the Science Kid.  I love Sid!   Mommy was talking mean to her camera because it wasn’t being nice to her.  It wasn’t taking pictures like it was s’posed to do. I think it’s funny when Mommy talks mean to the camera. As long as I have one of my cords to bite, I don’t really mind what the camera does.  Have a fun day.  I’m gonna go get my bags ready.  Maybe I’ll show you pictures of my sleepover room later when ...

I just heard from the ENT’s office.  After all the back and forth and waiting and such, the final word is that Thursday’s procedure will JUST be tubes in the ears, not tonsils or adenoids being removed.  There are a few reasons, but the main one is that he feels that it’s not fully necessary right now, that it wouldn’t really benefit her as much as we had hoped, so we’ll wait on T&*A. Tomorrow we’ll find out the time for us to report to the hospital.  But for now, you’re up to date.

Mommy came to get us this morning before me and Daddy even got up.  Daddy was still asleep on his little bed, but he woke up when Mommy came in.  He got in bed with me for a couple of minutes while I was trying to stay asleep because he thinks I’m cute, even with all my wires.  This was me with all my stuff on. I didn’t want to wake up.  I was still sleepy, but Miss Donna said she needed to take my wires off. This is Miss Donna and Daddy looking at my messy hair.  There was a lot of sticky stuff in there.  A lot! I came home and had a bath to clean out my hair, so it’s all ok now.  Miss Donna told Mommy and Daddy that I was the best kid she has had in a year!  Even the big kids aren’t as good as me, she said!  The doctor will call us in a few days to tell us about the sleeping test, but Miss Donna said they got lots of good stuff on me.  She doesn’t think I have a big sleep problem, though.  Mommy will t...

I’m home, after dropping Braska and M off at Children’s.  We got her all set up and wired up, and she did SO well.  I didn’t think she’d tolerate all the sticky things and leads, but she didn’t flinch.  Well, until they wanted to use one that would hook around her lip.  Nope, that was not going to happen.  Thankfully, her super nice tech Donna had another cannula without that hook, so all was ok. Here’s a pictorial version of the process. The little TV with Sprout on it was the saving grace.  She stayed focused on that and didn’t mind the rest of the action happening to her.  She was happy that Daddy was in p-jammies to and was ready to snuggle. The final look, cannula and all. A hug from Mommy before I left for the night.  She was plenty tired. Last minute adjustments.  She had leads on her legs, chest, face, and head. Ready to sleep, Daddy close to make sure she went do...