9.14
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Addison Stavar
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Addison Stavar
Addison finished her intensive at NAPA here in Austin two Fridays ago. She made great progress there, and we signed up for another one in October. That being said, we were contacted by a nonprofit in Dripping Springs that also does pediatric intensives PRO BONO. We signed up to do one in October, as well, but I think two back to back intensives will be too much, so I'm talking with both organizations to see what makes the most sense for spacing them out. We may not be able to get our money back from NAPA, in which case, we may end up sticking with doing that intensive first and then taking advantage of the pro bono one towards the end of the year. I'm disappointed we didn't find out about that option sooner, because of the cost savings, but I'm hopeful and know that regardless, we are in good hands doing another intensive at NAPA.
Three notable things that have happened since my last update - Addison said she wanted her pink scooter while watching her neighbor friend ride his, so we bought her another one. Kyle told her we didn't have that scooter anymore, and she said yes we do, we have a pink one. He repeated to her that we don't have that scooter anymore, but that we would make sure to get one again. She, obviously, cannot ride it still, but it's waiting for her, when the time is right. You better believe, I bought it immediately upon hearing she asked for hers. She knows she was in an accident and had lots of boo boos that required her to be in the hospital, but specifics have not been relayed to her. She also still doesn't seem to fully grasp her limitations.
Somtime this past week, we were driving to and from therapies, and she was moving her arms and hands to a Disney song, and she proclaimed "my hands are free! my hands are free!". I didn't think much of it, until later that evening, Kyle commented on how much more precise her hand movements were while playing with her. He was amazed at what a noticeable difference there was. I asked her if that's what she meant when she told me her hands were free, and she said, yes. I said, wow baby, it must feel so good to have your hands free. I can't imagine what she was experiencing sensationally when they weren't free, but how freaking cool is that, for her to proclaim that they were free!
Another time in the last week or so, I was sitting in her bedroom crying right before bed. Kyle was in there with me. We had spent the day with some of her friends, and I realized how sad I was after watching her peers, that she should be able to do what they were doing and wasn't able to. I told her I was crying because I didn't want her to have to relearn how to walk, and that it made me sad. She scoot crawled to me, and put her arms around me and said don't be sad mama. I couldn't believe it. This is somewhat out of character for her, and it really felt like God was comforting me in that moment through her. Have I been able to not be sad since then? No. It's devastating to see your child limited where they weren't beforehand, but it was encouraging. I am amazed by her resilience. She is in great spirits and just as silly as giggly as she ever was. Just since yesterday, we have noticed improvements in her movements. She has started to get on and off of the couch by herself. She seems to be more reserved in group settings with her peers, but Kyle made a good point - she is forced into observation, because she can't do what she used to, so it may not be reserved, it may just be true observation of what they are doing. Nontheless, it's hard for me to watch. I usually am concerned that she isn't enjoying herself. We went and spent some time with some friends from church on Friday and had a tea party and painted the girls nails. She was quieter than usual, but then it was time to leave, she didn't want to leave. That happens frequently with friends, so that signals to me that she is enjoying herself, but from the outside it looks different to me - she is quieter and less engaged. At home, she isn't. She's very comfortable at home with us, but out in the world, less so. I am hoping with time that will shift.
We are scheduled for follow up imaging in early November. We had an appointment to check on her G tube. We will go back in a few months to check in again. If we are no longer using it at that time, they will remove it. If we are still using it they recommend waiting until we are no longer using it to take it out. It's a hard thing to put back in once it's removed. We are using it sporadically for water flushes, if she isn't regular. She is regular about every other day at this point on her own eating and drinking habits, so I would say about every other day, we are giving her additional fluids to make sure she stays that way. We're also giving her molasses through her tube - they're full of nutrients that I was told by one of our health providers would do really well for her, before the accident. I have not, for the life of me, been able to get her to consume molasses in any form, so I've been jumping up and down in excitement that I can finally get some in her!
I'm enjoying being home with both kids. Our nanny had her first week last week, and that is going well. She takes initiative, which is a blessing for me. It feels like more than what we need right now, but I know that I would be overwhelmed without her, so I am thankful we have her to bridge the gap we're in.
Last week was a challenging therapy week with going to three different places and meeting all new providers. I altered our schedule and dropped a few sessions going forward and am feeling hopeful that this week will be less taxing on Addison, while still keeping her body progressing. Andrew got to attend a few sessions this past week, and he is such great comedic relief when things feel hard for her. For me, I love when he gets to come, because I don't like being away from him so much after all this time. I like when we're all together.
Addison says she no longer likes swings, which breaks my heart, because she was my swing girl from a young age. She could sit on a swing for hours, if I let her. That being said, there have been a couple of days she has requested going on a swing, and we've taken her, but her tolerance is low. I am really hopeful, with time, that swinging will feel freeing the way it used to. I did have a though in how some kids need to do different activities to feel regulated. I wondered if maybe the reason she didn't like swinging wasn't a negative, like I'm perceiving it. Maybe it used to be more necessary to regulate, and now it isn't. I don't know. Wishful thinking, perhaps.
Her speech is still slower than it was before, but I really like our speech therapist, and she shared that she has had some success with vibrational plates for the speed of speech, so we will be incorporating that into her sessions in the near future.
I took her to Target yesterday and HEB this morning. That's the first time she's been in a shop since the accident. She used to be my shopping buddy, so it was so lovely for me to have her with me again. I put her in the shopping cart, and she didn't love it at first. Things like that seem to be overwhelming for her the first time. We put her in the cart again this morning, and she was apprehensive until she found out that Andrew would be going in the cart next to her. That settled her.
She loves the song Heigh Ho from Snow White. We watched that movie not too long ago, and every day when we go to therapies, we sing Heigh Ho, Heigh Ho, it's home to therapies we go. Our other favorite is the Silly Pizza Song by Rachel Coleman. If you have kids, students, or grandkids, it's a super fun one. We passed by her old Mother's Day Out program the other day, and she said "there's my school!" But didn't ask about not going there. When we pass school buses, we talk about how those are taking kids to school, and how she isn't going to school right now, "just therapy". She doesn't seem to be confused, concerned or phased in the least at this - just in acceptance, which helps my heart.
Yesterday, when we were at Target, there were four bats hanging from the ceiling. She asked what those were, and we talked about the bats that fly out from under the Congress bridge in Austin. We named all of the bats while waiting in the checkout line, and then later yesterday evening were telling Kyle about the bats, and Addison remembered every single one of the bats names. I didn't even remember them! This was very encouraging for me, as her retention is strong. There have been some other instances like that, where I have been really amazed by her memory, and mostly relieved.
I can't think of specific examples right now, but she is very clearly developing. The way she formulates questions and sentences, and the way she correlates things, has changed. You can tell she is approaching 3.5, and I'm grateful and relieved that, although, she has regressed in some areas, she continues to develop. It's so fun to watch her grow older, and I'm already excited about her turning 4 next April.
I think that's all for now. Hyperbaric is next on my list to decide if we're going to proceed with doing. If you have personal stories or information on anyone you know who has had success using hyperbaric, please let me know. I'm mainly interested in children in similiar situations and their results, but I would love to hear any feedback. I talked to one of our providers, and she seemed to express that she hasn't seen the needle move much when kids have tried it. I'm praying on it, but right now I have some apprehensions. I want to make sure we do everything for her to give her the best chance at recovery, of course, but we're still sitting with this option.
Please continue to pray for a full recovery - that she will walk, run, swim, sing, jump and dance again - oh ! she did ask to dance with me in the kitchen the other night, so I helped her stand, while she danced. She also asked to help me check out groceries today, which she used to help me do. I didn't have her wheelchair, so that was challenging to hold her up and hold the groceries, etc. but I was so thankful and relieved that she desired to do that. She is putting things away regularly with no complaints or delaying when I ask her. It seems like therapies have really helped with that rhythm of picking up after playing with something, which has been a nice perk. Pray that her speech speed would resume its normal cadence as well as her movements.
Three notable things that have happened since my last update - Addison said she wanted her pink scooter while watching her neighbor friend ride his, so we bought her another one. Kyle told her we didn't have that scooter anymore, and she said yes we do, we have a pink one. He repeated to her that we don't have that scooter anymore, but that we would make sure to get one again. She, obviously, cannot ride it still, but it's waiting for her, when the time is right. You better believe, I bought it immediately upon hearing she asked for hers. She knows she was in an accident and had lots of boo boos that required her to be in the hospital, but specifics have not been relayed to her. She also still doesn't seem to fully grasp her limitations.
Somtime this past week, we were driving to and from therapies, and she was moving her arms and hands to a Disney song, and she proclaimed "my hands are free! my hands are free!". I didn't think much of it, until later that evening, Kyle commented on how much more precise her hand movements were while playing with her. He was amazed at what a noticeable difference there was. I asked her if that's what she meant when she told me her hands were free, and she said, yes. I said, wow baby, it must feel so good to have your hands free. I can't imagine what she was experiencing sensationally when they weren't free, but how freaking cool is that, for her to proclaim that they were free!
Another time in the last week or so, I was sitting in her bedroom crying right before bed. Kyle was in there with me. We had spent the day with some of her friends, and I realized how sad I was after watching her peers, that she should be able to do what they were doing and wasn't able to. I told her I was crying because I didn't want her to have to relearn how to walk, and that it made me sad. She scoot crawled to me, and put her arms around me and said don't be sad mama. I couldn't believe it. This is somewhat out of character for her, and it really felt like God was comforting me in that moment through her. Have I been able to not be sad since then? No. It's devastating to see your child limited where they weren't beforehand, but it was encouraging. I am amazed by her resilience. She is in great spirits and just as silly as giggly as she ever was. Just since yesterday, we have noticed improvements in her movements. She has started to get on and off of the couch by herself. She seems to be more reserved in group settings with her peers, but Kyle made a good point - she is forced into observation, because she can't do what she used to, so it may not be reserved, it may just be true observation of what they are doing. Nontheless, it's hard for me to watch. I usually am concerned that she isn't enjoying herself. We went and spent some time with some friends from church on Friday and had a tea party and painted the girls nails. She was quieter than usual, but then it was time to leave, she didn't want to leave. That happens frequently with friends, so that signals to me that she is enjoying herself, but from the outside it looks different to me - she is quieter and less engaged. At home, she isn't. She's very comfortable at home with us, but out in the world, less so. I am hoping with time that will shift.
We are scheduled for follow up imaging in early November. We had an appointment to check on her G tube. We will go back in a few months to check in again. If we are no longer using it at that time, they will remove it. If we are still using it they recommend waiting until we are no longer using it to take it out. It's a hard thing to put back in once it's removed. We are using it sporadically for water flushes, if she isn't regular. She is regular about every other day at this point on her own eating and drinking habits, so I would say about every other day, we are giving her additional fluids to make sure she stays that way. We're also giving her molasses through her tube - they're full of nutrients that I was told by one of our health providers would do really well for her, before the accident. I have not, for the life of me, been able to get her to consume molasses in any form, so I've been jumping up and down in excitement that I can finally get some in her!
I'm enjoying being home with both kids. Our nanny had her first week last week, and that is going well. She takes initiative, which is a blessing for me. It feels like more than what we need right now, but I know that I would be overwhelmed without her, so I am thankful we have her to bridge the gap we're in.
Last week was a challenging therapy week with going to three different places and meeting all new providers. I altered our schedule and dropped a few sessions going forward and am feeling hopeful that this week will be less taxing on Addison, while still keeping her body progressing. Andrew got to attend a few sessions this past week, and he is such great comedic relief when things feel hard for her. For me, I love when he gets to come, because I don't like being away from him so much after all this time. I like when we're all together.
Addison says she no longer likes swings, which breaks my heart, because she was my swing girl from a young age. She could sit on a swing for hours, if I let her. That being said, there have been a couple of days she has requested going on a swing, and we've taken her, but her tolerance is low. I am really hopeful, with time, that swinging will feel freeing the way it used to. I did have a though in how some kids need to do different activities to feel regulated. I wondered if maybe the reason she didn't like swinging wasn't a negative, like I'm perceiving it. Maybe it used to be more necessary to regulate, and now it isn't. I don't know. Wishful thinking, perhaps.
Her speech is still slower than it was before, but I really like our speech therapist, and she shared that she has had some success with vibrational plates for the speed of speech, so we will be incorporating that into her sessions in the near future.
I took her to Target yesterday and HEB this morning. That's the first time she's been in a shop since the accident. She used to be my shopping buddy, so it was so lovely for me to have her with me again. I put her in the shopping cart, and she didn't love it at first. Things like that seem to be overwhelming for her the first time. We put her in the cart again this morning, and she was apprehensive until she found out that Andrew would be going in the cart next to her. That settled her.
She loves the song Heigh Ho from Snow White. We watched that movie not too long ago, and every day when we go to therapies, we sing Heigh Ho, Heigh Ho, it's home to therapies we go. Our other favorite is the Silly Pizza Song by Rachel Coleman. If you have kids, students, or grandkids, it's a super fun one. We passed by her old Mother's Day Out program the other day, and she said "there's my school!" But didn't ask about not going there. When we pass school buses, we talk about how those are taking kids to school, and how she isn't going to school right now, "just therapy". She doesn't seem to be confused, concerned or phased in the least at this - just in acceptance, which helps my heart.
Yesterday, when we were at Target, there were four bats hanging from the ceiling. She asked what those were, and we talked about the bats that fly out from under the Congress bridge in Austin. We named all of the bats while waiting in the checkout line, and then later yesterday evening were telling Kyle about the bats, and Addison remembered every single one of the bats names. I didn't even remember them! This was very encouraging for me, as her retention is strong. There have been some other instances like that, where I have been really amazed by her memory, and mostly relieved.
I can't think of specific examples right now, but she is very clearly developing. The way she formulates questions and sentences, and the way she correlates things, has changed. You can tell she is approaching 3.5, and I'm grateful and relieved that, although, she has regressed in some areas, she continues to develop. It's so fun to watch her grow older, and I'm already excited about her turning 4 next April.
I think that's all for now. Hyperbaric is next on my list to decide if we're going to proceed with doing. If you have personal stories or information on anyone you know who has had success using hyperbaric, please let me know. I'm mainly interested in children in similiar situations and their results, but I would love to hear any feedback. I talked to one of our providers, and she seemed to express that she hasn't seen the needle move much when kids have tried it. I'm praying on it, but right now I have some apprehensions. I want to make sure we do everything for her to give her the best chance at recovery, of course, but we're still sitting with this option.
Please continue to pray for a full recovery - that she will walk, run, swim, sing, jump and dance again - oh ! she did ask to dance with me in the kitchen the other night, so I helped her stand, while she danced. She also asked to help me check out groceries today, which she used to help me do. I didn't have her wheelchair, so that was challenging to hold her up and hold the groceries, etc. but I was so thankful and relieved that she desired to do that. She is putting things away regularly with no complaints or delaying when I ask her. It seems like therapies have really helped with that rhythm of picking up after playing with something, which has been a nice perk. Pray that her speech speed would resume its normal cadence as well as her movements.
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