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.
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.
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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.
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.
 The McMansion/"little room" |  The resonance board is below her |
Strolling at The Summit 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.
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.
The light up LED things 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.
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.
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