Autumn got a new contraption for therapy. It's called a SWASH and it helps support her so we can sit her up and she can concentrate on working on her head control and not trying to do trunk control and head control at the same time. I think it's going to make a big difference. I'm a little frustrated because they therapists want me to work on therapy more than I have time for and I'm sick of having to make EVERYTHING into a therapy session and not being able to just enjoy loving on Autumn. There is just not enough hours in the day...they want me to do head control, rolling over, trunk control, work on pushing with her arms, leaning on her arms, banging objects, etc. Okay, when am I suppose to do my household chores, play and care for my other kids, have my time, and everything else life demands. I'm not superwoman people!!! lol Also, Autumn can only handle so much and she is wiped out....today she was not very cooperative during OT because I think she's tired of it as well. ;) Anyways, here is a picture of the SWASH.....
It props her up and you can see how well she's holding her head up..it makes it hands free for me as well so I can do things while she's getting therapy done. Sometimes I put a boppy pillow in front of her to lean on to work on pushing with her arms. I have to watch her though when I do it that way because she will lean back and the SWASH stays in one place but her head will be bent completely backwards and she will be leaning almost all the way back. Oops!
Here's daddy and Autumn at the duck pond
Here's Sarah trying to get in front of Gage for pictures.
Autumn enjoying her first trip to the duck pond. Three little kids were walking by when Autumn started beeping. They stopped to see what was going on.....one boy (about 7) looked at me real sad and said, "I'm sorry"....I did not know how to respond. He then asked if she was sick. So, I explained to the kids that sometimes her brain does not tell her to breathe that's why she needs a machine. I told them about the "hole" in her neck and how she breathes differently than we do. One boy said, "I don't have a hole in my neck" and showed me. They were sweet kids and then started talking to Autumn. I like when I can explain to kids about Autumn and hopefully them understanding they will realize she's almost as normal as they are and accept kids that are different. They were excited to show Autumn to their grandparents. Kids are always more curious and honest and I would rather they come up and asked me about her then just stare at her like most adults do. ;)
That is our busy week and the rest of the week should be pretty calm. I do have to do some volunteer hours with Madison for church camp but not really sure if we will be able to get them all in because tomorrow we were going to do a couple but now my nurse can't come until later and James is working so hopefully we can find some time before May 28th when they are due. Have a blessed week.
It props her up and you can see how well she's holding her head up..it makes it hands free for me as well so I can do things while she's getting therapy done. Sometimes I put a boppy pillow in front of her to lean on to work on pushing with her arms. I have to watch her though when I do it that way because she will lean back and the SWASH stays in one place but her head will be bent completely backwards and she will be leaning almost all the way back. Oops!
Here's daddy and Autumn at the duck pond
Here's Sarah trying to get in front of Gage for pictures.
Autumn enjoying her first trip to the duck pond. Three little kids were walking by when Autumn started beeping. They stopped to see what was going on.....one boy (about 7) looked at me real sad and said, "I'm sorry"....I did not know how to respond. He then asked if she was sick. So, I explained to the kids that sometimes her brain does not tell her to breathe that's why she needs a machine. I told them about the "hole" in her neck and how she breathes differently than we do. One boy said, "I don't have a hole in my neck" and showed me. They were sweet kids and then started talking to Autumn. I like when I can explain to kids about Autumn and hopefully them understanding they will realize she's almost as normal as they are and accept kids that are different. They were excited to show Autumn to their grandparents. Kids are always more curious and honest and I would rather they come up and asked me about her then just stare at her like most adults do. ;)
That is our busy week and the rest of the week should be pretty calm. I do have to do some volunteer hours with Madison for church camp but not really sure if we will be able to get them all in because tomorrow we were going to do a couple but now my nurse can't come until later and James is working so hopefully we can find some time before May 28th when they are due. Have a blessed week.
2 comments:
Staring makes me so angry! I had a woman that was getting her daughter to stare too saying "Look at THAT baby!" I about wanted to rip her head off, but instead I shot her a nasty look and she quieted down.
With all the exercises, don't get overwhelmed. Therapists have no idea what it's like to have a special needs child and all the demands that come with it. It's impossible to work on everything every day. Just as you have other chores to do, Autumn should have some "normalcy" too where she's not having to run a marathon every day! (Sometimes I think the therapists forget that it's a major workout for the baby too!) There are always more things we can be doing with our kids during the day (as far as development goes), but at some point we have to really assess what's best for our families. Is Autumn really going to be hurt by skipping one session of trunk control that day? I seriously doubt it... but the PT/OT will make you think the world is going to end. Take what they have to say with a grain of salt and do what you feel is best. This is YOUR life, and I guarantee you will do the best that you can for Autumn.
At the end of the day, when you finally go to bed just ask yourself if you're happy with what happened that day. Not did you make progress or not did you work everything in... but were you happy? To me, that's all that matters. Because if you're happy, your children can feed off that energy and thrive.
Something I don't tell many people is that I have struggled so hard to balance being a Mom, a therapist, and a nurse. I've had to do my own sole searching and really figure out what was most important to me. There's a give and take relationship with all three, and finding an equal balane is hard. It's also hard to separate between the three, sometimes, but being a mother will come first. I may not get Mac's exercises in that day or I may not do oral stim with every single feeding... but I know she feels loved and as a Mom, I can't ask for more.
PS - Your family is absolutely gorgeous. I'm glad everything went well and I hope you're able to go to churh routinely now. I know how much it means to you to go, and I'm glad you're finally able to. :o)
Hey Lacy!! What great pics:) I am so blessed by Autumns story every time I read your blog! I got to see Kyla yesterday at my Nanny's house...random, huh? She is so sweet and her new baby is adorable:) Have a great day and bless every step you take, Lacy:)
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