Since I left off, not a lot has happened.  We've mainly done the usual.  School wrapped up last week, so our families have departed.  We are all on our own again.  Honestly it's kind of nice, but we couldn’t have made it through the last few weeks without them.  They were such a huge help.  Lindsay's mom took Bentley to all of her appointments last week while I finished exams.  However, I did make it to see the Pediatrician. 

Bentley weighed in at a whopping 11 lbs 12 oz.  She's not quite on the curve yet, but she's gained over a pound since we left the hospital.  This NG tube is working.  I was looking at pictures of her from the hospital and her legs looked so skinny.  Now she's getting some chunk to her.  It's about time.  I think she's gotten a lot of strength back because we haven't had to supplement many bottles this week.  She's eating much better.  While we were at my graduation dinner last week, Aunt Melissa and Cousin Carson were babysitting.  I had warned Melissa that I thought B might pull her tube out.  I was right.  Not long after we arrived at dinner I got a text saying Melissa turned her head for 2 seconds, and B had pulled it out.  I used it as a Mother's Day present.  We left it out for Sunday, and let Lindsay spend the day without having to kiss around a NG tube.  Made for a good day.  I was pretty sad to put it back down that night.  Although, she needs it.  The Garrison's left Sunday, and we prepared for what the next month would be like.  Daddy Daycare.     

Our first week of Daddy Daycare is almost over.  It's been a great week.  We heard from the Neurologist on Monday.  He informed us that the preliminary results from the muscle biopsy showed less abnormality than he was expecting.  The muscle tissue wasn’t normal, but less abnormal.  Since Lindsay was the one who spoke with him so that's about all the info I have.  Although, she asked if she could be happy about the results, and he said "Yes."  We'll take it.  In this case less is better than more.  The kids in the AT&T commercials are wrong!  

The rest of the week has been fun.  I've started packing the house.  Slowly.  Bentley doesn’t like me packing.  She prefers me playing.  So we play a lot too.  The Bell Center built us a "little room" thing, and once I finally saw it, I had to make one too.  So, I made that in between packing and feeding.  I learned drilling through plexiglass is not the easiest thing to do. You have to take it slow.  Bentley wasn't overly impressed by mine.  She just laid there and hardly played with a toy.  These "little rooms" are so simple you would think Fisher Price would already make a version, but they are a little bulky.  You should see our den right now: boxes, toys, diapers, and Bentley's McMansion.  I call the cardboard one I made, Bentley's Housing Project.  You gotta start somewhere.  I wanted to start teaching her, early, that you aren’t born deserving the things your parents have. You have to earn them.  Fortunately for her, her smile earned her an upgrade pretty quick.  The McMansion is pretty cool, the peg-board allows you to put objects along the walls as she gets bigger and can reach that far.  For now, she just loves playing with her toes.  

I'm trying to fully embrace the Stay-at-home Dad role for now.  I have a camo diaper bag that is so freaking cool.  Yesterday we met a friend for lunch.  Today we met another friend for lunch and took a stroll around The Summit.  Jess happened to be eating there as well, so Bentley spent the meal with Jess and her friends.  Walking around The Summit with a stinkin’-cute baby isn't half bad.  Except, after one pass there's nothing left to do.  How do women spend so much time there?  I also found myself asking a few questions:  Is it ok to take a stroller in a restaurant?  Where does it go once it's in there?  Can you take them in every store as well?  Do any stores have signs that say "Babies keep out!" or "No Babies Allowed?"  I mean, they can spit up on the floor, or touch something nice with dirty hands, or cause you to spill something.  Babies are dangerous.  I have a lot to learn about being a stay-at-home dad.  We'll take a few more adventures next week.  Maybe we'll find a petting zoo.  If anyone has any ideas for where to take a baby let me know.  It may be too early, but I figure I should take advantage now.  My opportunities for daytime adventures will be greatly reduced for a number of years once work starts up.  

Anywho, to cap off the day we went over to Hand in Hand's Sensory Room.  This room is amazing.  It looks straight out of a catalog.  Not Pottery Barn or Orvis, but South Paw or SpecialNeedsToys.com's catalog.  There were pads all over the floor.  Bright light projectors like at a concert.  Bubble water towers surrounded by mirrors that reminded me of something else.  A waterbed, a Light Board, a texture wall/board thing, and the best part---A huge subwoofer bandpass box the size of a table covered in padding.  Basically, a padded table top with loads of bass underneath it.  We weren't exactly listening to my favorite music, but the bass was still thumping.  I think B enjoyed it.  It was definitely a first time experience for her, because even the sub in my truck can't do what this table can.  I'll try to post a video of it.  There were also some fun light up LED fiber optic things that lit up and she played with.  I think we overwhelmed her a little but it was so much fun.  I need way more than an hour in there.  Although, B is probably fine with the hour.  Our therapist is going to try and get us back again before the move.  She' awesome, our therapist that is.  We have been blessed with some great people helping out.  The sensory room was just so awesome.  I want one.  For me.  

I guess that's it for now.  Oh wait.  Bentley pulled out her NG again last night.  Hahahahaha.  I just think it’s funny.  It’s also funny how when a patient used to do that I’d be so frustrated, but when my baby does it I laugh.  I started writing this last night, as in Thursday.  Lindsay was upstairs with her.  She got ahold of it around midnight and Lindsay heard her choking it up.  Oh well.  We had a fun day without it.  I'll put it back down tomorrow night, missing one night of tube feeds won't kill her.  In case any of our docs get this report, we're still doing everything we're supposed to I promise.  She sucked down all of her bottles today, and ate some real food (apples and carrots).  By my inaccurate calculations she met her caloric goals for the day.  

Next week we meet with genetics again.  Hopefully they will have some news for us. We go back to speech therapy at the Hear Center.  It's our last week of the semester at The Bell Center.  We meet with the Pulmonologist to follow-up on everything we implemented in the hospital, and hopefully get rid of all these oxygen tanks.  At this point we don't have any lunches scheduled.  So, if any of you Stay-at-home Dad's want to get together, text me.  Oh wait, I don't know any, and if I did, they probably wouldn't be reading a silly update.  They'd be watching Ellen.  

As you can imagine, going home helps everybody get better.  Since we made it home Bentley has done nothing but improve.  She took a couple of days to get used to the overnight tube feedings, or maybe we had to get used to how she tolerated the overnight tube feedings.  Either way, she is sleeping better than she ever has, except for the incredibly nasty cough that emerges sporadically throughout the night.  She still wakes up a little, but that’s expected I guess.  Her lungs still sound terrible, but with the increased energy she has gained, it is not draining her like it was before.  We are continuing the strict respiratory therapy regimen we became accustomed to at the hospital.  I think it has helped a lot.  Bentley is getting pretty used to it, and starts grinning when we are percussing her chest. She also loves the vibrations the nebulizer machine makes.  It is such a steady powerful vibration, she has started holding the nebulizer mask with us, it's so cute.  

Most importantly she has started to find her routine again.  We have learned consistency and routine is very important for blind children.  They don't know what night and day is like we do, so we have created a pattern she can become accustomed to.  Ours focuses on her pajamas, bath time, and the feeding routine we have before bed and when she wakes up.  We decided that footy pajamas would be a good way to signal that its bedtime.  So, every night after she eats we put on her footy pajamas.  This is the only time of the day we are allowing her to wear any clothes with feet.  We do use socks when necessary, but that is a different sensation.  We are also using bath time as a trigger for night.  Every other night she gets a bath before putting on her pajamas.  B loves bath time.  She gets the biggest smile in the water.  She kicks her feet and grins so big with we pour water over her head.  I can't wait to get her swimming.  I know we do a couple other things before bed, but those are the two biggies.

The rest of the day focuses more on routines right around each feeding.  We each hold her in a different way, we hold the bottles different ways, and burp her differently.  I think this helps her identify who is doing what.  Of course, she likes the way I do everything the most.  We have also been coming up with little hand signals to communicate things.  Not that she understands them yet, but she will.  For instance, we squeeze her hand three times to signal "I love you."  We rub our hand over her head from back to front and tap her nose for "I'm not touching you, but don't worry, I’m close by if you need me," for those times you have to put her down and go refill your Kool-Aid or use the bathroom.  Of course, we rub her hands down our faces hoping she will soon learn some of their characteristics and know us that way as well.  Since I rarely shave she knows me as the scratchy warm surface that makes vibrations on her stomach (farting noises) and touches her face all over a thousand times at a time (when I kiss her).  Lindsay's face is probably the warm soft surface that smells like Neutrogena.  Momma B, Poppa, Mimi, Pop, Aunt Missa, Aunt Jess, and everyone else are trying to figure out what their sign will be for her to know them.  I don't exactly have a for-sure one yet, but I'm trying to rub my nose and forehead on her cheek and temple at the same time.  This might just scare her!  She probably feels this rush of warm foul smelling wind as my breath approaches her when I do that.  Oh, well.  She'll get used to it.  

I’ve mentioned how Hand-in-Hand made the resonance board.  Well, The Bell Center made Bentley a “little room.”  It’s hard to explain, and I don’t have pics yet, but it’s a little box/room/crate type of a thing that has toys hanging from it.  You can place different textured toys on the sides, which she can touch with her hands and feet.  The ceiling is plexi-glass for watching her.  It’s really cool.  You can google them and find a couple of blogs where people have made them.  We’re going to make one for home as well.  I have one made out of a cardboard box and some foam flooring but it’s really ghetto, and I’m embarrassed to show you.

Not much else going on.  Just wanted you to know she’s getting better.  Thanks for the prayers.  We’re keeping up the supplemental feedings and overnight continuous feedings.  Our target of close to 560 cal/day is being met with no problem.  Momma B has been here helping out since the second night in the hospital, over 2 weeks.  Poppa (Ken) has been here for two days and hasn’t put her down.  Mimi comes in a few days to help out.  Just trying to get school out of the way and then I take the reigns until July. Couldn't do it without their help, THANK YOU!