Sunday, January 26, 2014
Family Photo Shoot
Here are some beautiful pictures that we had taken of our family back in November.
Tuesday, January 21, 2014
What is there to say?
I continue to be thankful at how little I have to post about Leah's spina bifida. The couple appointments that we've had this month have been Early Intervention from the school district and swimming lessons. EI's assessment continues to be that Leah is right at her age for all of her developmental milestones, with the exception of gross motor skills. She's talking in 2-3 word sentences, she's picking up new words everyday, and her fine motor skills are above average. Even though she's not walking, she is mobile in her own way. She uses her zip-zac all over the house and at the random Barnes'n'Noble or coffee shop outings, and she uses her wheelchair at school and when we let her have mobility out in public. She's getting so much better in her chair, so we've taken it out much more often. Since she's still a toddler, sometimes I put her in the shopping cart or stroller to do errands.
She also is doing swimming twice a week, which is awesome! Tuesdays are 1/2 hour one-on-one lessons with an instructor. They work on her core strength and also to get her to learn how to swim. She's gone from hating the lessons and crying the entire time to reaching for her teacher every week. Saturday mornings she does aqua baby class with either mom or day. That is really fun!! We float around the pool and sing songs and she mostly points to the other babies, the baby mamas and baby daddies. We do swimming at a place about 20 minutes away that specializes in rehabilitation services for people of all ages. There are a lot of other kids who use their services for adaptive swimming lessons with a variety of disabilities. They also have lots of other adaptive sports, including skiing, wheelchair basketball, softball, and other sports she'll be able to play as she gets older. On Saturday mornings they have wheelchair basketball practice and she likes watching the big kids play. Soon that will be her!
We also took her ice skating! We got her in her mobile stander and put her out on the ice, and she went to town. The biggest accomplishment was getting her to keep her gloves on her hands! Now I very much dislike the winter and the cold, but at least this is something that gets us out of the house, and she sleeps really, really well after being outside. On second thought, this is a great activity for Leah and Daddy to give me a little break. That's about all there is to say for now. I have a few pictures to share so check back another time. I have a little girl who needs a bath!
She also is doing swimming twice a week, which is awesome! Tuesdays are 1/2 hour one-on-one lessons with an instructor. They work on her core strength and also to get her to learn how to swim. She's gone from hating the lessons and crying the entire time to reaching for her teacher every week. Saturday mornings she does aqua baby class with either mom or day. That is really fun!! We float around the pool and sing songs and she mostly points to the other babies, the baby mamas and baby daddies. We do swimming at a place about 20 minutes away that specializes in rehabilitation services for people of all ages. There are a lot of other kids who use their services for adaptive swimming lessons with a variety of disabilities. They also have lots of other adaptive sports, including skiing, wheelchair basketball, softball, and other sports she'll be able to play as she gets older. On Saturday mornings they have wheelchair basketball practice and she likes watching the big kids play. Soon that will be her!
We also took her ice skating! We got her in her mobile stander and put her out on the ice, and she went to town. The biggest accomplishment was getting her to keep her gloves on her hands! Now I very much dislike the winter and the cold, but at least this is something that gets us out of the house, and she sleeps really, really well after being outside. On second thought, this is a great activity for Leah and Daddy to give me a little break. That's about all there is to say for now. I have a few pictures to share so check back another time. I have a little girl who needs a bath!
Saturday, January 4, 2014
Spina Bifida Update
Thankfully there's not a ton going on with her that's SB related these days, but since I haven't said much about it lately, and since my blog is about her SB, here we go....
The biggest news is that we picked up her Hip-Knee-Ankle-Foot Orthotics right before Christmas. Ty took her to the orthotics company for a 3-hour appointment. Yes, it took about 3 hours! Even though Leah was casted for them, once she got the HKAFO's on, there were still tweaks to be made. She'd get them on, the orthotics rep made a few marks, and then took them off to make the changes. Ty and Leah got lots of breaks, one that was 45 minutes and ended up with the two of them picking out a dozen cupcakes, but that story is for another time! The HKAFO's are the same plastic material as her AFO's, but they go all the way up her legs to her hips, and then there is a back brace that goes about half-way up her back. They should grow with her but only for a few more inches.
The reason we got this is for her to learn how to walk. She doesn't have any muscle tone below her hips, so she cannot stand without support. Some kids have muscle tone down to their knees or even lower, but Leah needs that support all the way up her leg. Even with the braces, she can't stand on her own just yet. That's a skill that will eventually come but it's not there yet. In order for her to start walking, she'll first need to learn how to move her legs forward, and she'll need support on a walker to help her. She will figure out how it works best for her, whether it's shifting weight to one side and using her hip to pull the leg, or using her arms to hold her up on her walker and swinging both legs forward... or doing something that's completely her own way of doing things. Who knows! If she wants to walk, she'll find a way. If she doesn't, that's totally fine with us too. We are going to give her the opportunity to decide if it's right for her and support her through it and then let her decide how she prefers to get around. Either way, being in a standing frame will continue to build strong muscles in her arms and her legs, which is always a good thing!
The other thing we're working on from a physical standpoint is figuring out how to get her on and off the couch, in and out of her new little chair and her zip-zac and eventually her wheelchair. She is incredibly strong in her arms and back and abs... like the girl can almost do a chin-up with no help from us! But she's also lugging around dead weight in her legs since they offer her no support. She can get off the couch if there's a pillow for her to climb onto; she falls out of the zip-zac (sometimes on purpose, sometimes not), and out of her foam chair. But she can't get back in, and her favorite game now is "up" where mommy puts her back up on the couch to watch her climb down. She might just need a little time to get taller so she can reach the couch but we're also trying to figure out how teach her to do it herself.
Then there's the business of potty training. 2 of my nephews are in the process of being potty trained, something we watched while we were back home for Christmas. The constant asking if they have to go potty, reminders not to go potty on the carpet, and rewards for being dry all night... something I would be dreading now as Leah is turning 2 if she were "normal" but she's not and it makes me a little bit sad that we have to be different. When I started learning about all the things in the SB world, this "bathroom business" stressed me out the most. It still does. Shunts are annoying because they sometimes fail and HELLO! it's brain surgery! Wheelchairs are also annoying and having to carry her all the time is hard... but dammit why can't she just go to the bathroom like everyone else!?!?? We have been so fortunate for the last 2 years that we don't use catheters for peeing, and she's never had a problem with constipation... both things that are very common. Since it's been so easy, I'm afraid we're in for a real treat when we do start.
This is also the area that gives me the most pause about sharing. I will try to balance the fact that we're open with Leah's SB and everything that comes along with that, and the fact that this is a very private thing for her, and she may not want everyone knowing how she does her business because OH MY GOODNESS if my mom shared that with the world, I would have been mortified!! So, for now, what I'll say is that today she's just like any other 2-year old in diapers. By the time she gets to kindergarten, she'll be out of diapers. How we get there, I sure as heck don't know, and I'm not sure how much you'll all know either. I'll share when I think it's appropriate and won't when it's not. And I'll ask for a lot of forgiveness from my pre-teen in a few years!
The biggest news is that we picked up her Hip-Knee-Ankle-Foot Orthotics right before Christmas. Ty took her to the orthotics company for a 3-hour appointment. Yes, it took about 3 hours! Even though Leah was casted for them, once she got the HKAFO's on, there were still tweaks to be made. She'd get them on, the orthotics rep made a few marks, and then took them off to make the changes. Ty and Leah got lots of breaks, one that was 45 minutes and ended up with the two of them picking out a dozen cupcakes, but that story is for another time! The HKAFO's are the same plastic material as her AFO's, but they go all the way up her legs to her hips, and then there is a back brace that goes about half-way up her back. They should grow with her but only for a few more inches.
The reason we got this is for her to learn how to walk. She doesn't have any muscle tone below her hips, so she cannot stand without support. Some kids have muscle tone down to their knees or even lower, but Leah needs that support all the way up her leg. Even with the braces, she can't stand on her own just yet. That's a skill that will eventually come but it's not there yet. In order for her to start walking, she'll first need to learn how to move her legs forward, and she'll need support on a walker to help her. She will figure out how it works best for her, whether it's shifting weight to one side and using her hip to pull the leg, or using her arms to hold her up on her walker and swinging both legs forward... or doing something that's completely her own way of doing things. Who knows! If she wants to walk, she'll find a way. If she doesn't, that's totally fine with us too. We are going to give her the opportunity to decide if it's right for her and support her through it and then let her decide how she prefers to get around. Either way, being in a standing frame will continue to build strong muscles in her arms and her legs, which is always a good thing!
The other thing we're working on from a physical standpoint is figuring out how to get her on and off the couch, in and out of her new little chair and her zip-zac and eventually her wheelchair. She is incredibly strong in her arms and back and abs... like the girl can almost do a chin-up with no help from us! But she's also lugging around dead weight in her legs since they offer her no support. She can get off the couch if there's a pillow for her to climb onto; she falls out of the zip-zac (sometimes on purpose, sometimes not), and out of her foam chair. But she can't get back in, and her favorite game now is "up" where mommy puts her back up on the couch to watch her climb down. She might just need a little time to get taller so she can reach the couch but we're also trying to figure out how teach her to do it herself.
Then there's the business of potty training. 2 of my nephews are in the process of being potty trained, something we watched while we were back home for Christmas. The constant asking if they have to go potty, reminders not to go potty on the carpet, and rewards for being dry all night... something I would be dreading now as Leah is turning 2 if she were "normal" but she's not and it makes me a little bit sad that we have to be different. When I started learning about all the things in the SB world, this "bathroom business" stressed me out the most. It still does. Shunts are annoying because they sometimes fail and HELLO! it's brain surgery! Wheelchairs are also annoying and having to carry her all the time is hard... but dammit why can't she just go to the bathroom like everyone else!?!?? We have been so fortunate for the last 2 years that we don't use catheters for peeing, and she's never had a problem with constipation... both things that are very common. Since it's been so easy, I'm afraid we're in for a real treat when we do start.
This is also the area that gives me the most pause about sharing. I will try to balance the fact that we're open with Leah's SB and everything that comes along with that, and the fact that this is a very private thing for her, and she may not want everyone knowing how she does her business because OH MY GOODNESS if my mom shared that with the world, I would have been mortified!! So, for now, what I'll say is that today she's just like any other 2-year old in diapers. By the time she gets to kindergarten, she'll be out of diapers. How we get there, I sure as heck don't know, and I'm not sure how much you'll all know either. I'll share when I think it's appropriate and won't when it's not. And I'll ask for a lot of forgiveness from my pre-teen in a few years!
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