Momma B took her for a stroll
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Happy happy happy
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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!
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!
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