Hello everyone,
Thanks for stopping by for the ever changing updates! Well, the orthotics only got us so far, and G’s pain accumulates easily. We ended up in a bad spot pain-wise and had to have en emergency check-in with our specialist. I used to be able to hold it together, but these days I tend to cry when leaving phone messages for doctors when G is in pain. Which I cannot say that I recommend, but it certainly got us right in. Her pain seems to be referred to just above her ankles rather than directly in the joint (who knows why), so we are trying to give those muscles and tendons some more support with these fancy braces. She shouldn’t wear them ALL the time as we don’t want her muscles to atrophy, but we are giving this a go. She rides in the big part of the cart if we need to run into Target, and we rent a wheelchair at any sort of mall/museum setting which requires much of any walking (not that we are doing a ton of that right now). I successfully navigated getting her a 504 at school to mitigate time on her feet, and school was really helpful about that. But we are definitely struggling with chronic pain and quality of life. So, two main bits of news:
1. Her Orthopaedic doc (our second opinion) wondered about a possible soft tissue disorder given her history. The last system to check that hasn’t already been treated would be her heart. Yikes. But never fear- we saw the pediatric cardiologist and her echocardiogram and EKG were CLEAR! WOO! But we still have no idea if she really has a connective/soft tissue disorder. We could go see a geneticists and have lots of tests done if we really, really want to know, but I’m not sure it would change anything for her at this point. So, scariest stuff was ruled OUT! Yay 😀
2. Our pediatrician is sending us to the Phoenix Children’s pain clinic to help manage chronic pain and to see if anything is happening either nerve-wise or nervous system-wise. This chronic pain may be making her whole body overreact. She recently had some baby teeth pulled (I know- poor her!) and although she was numb and with a great dentist, she reported feeling “the worst pain of her life” which was a red flag to our pediatrician. We are also getting a third opinion on her ankles with a PCH orthopedist foot/ankle doc.
I can confidently say that we are pretty sick of attending doctor appointments, but I can only feel grateful that we have the means to do so. Seeing our kiddo in pain is super hard. I do well when there is something I can do about it. This is one of those weird instances where we know what the problem is…. Mostly. But there’s not a lot we can do to treat it. Or maybe we just haven’t found that piece of the puzzle yet. Ya’ll know I won’t quit until we find it. Also, I’m 100 years old now 👵 😂
But I’m an optimist, darn it, so I shall leave you with some fun shenanigans. Before we got quarantined in the midst of a school COVID outbreak (that’s not the fun part), we made it up to canyon lake and have been trying on our Halloween costumes 🎃 😆
Thanks for stopping by for the ever changing updates! Well, the orthotics only got us so far, and G’s pain accumulates easily. We ended up in a bad spot pain-wise and had to have en emergency check-in with our specialist. I used to be able to hold it together, but these days I tend to cry when leaving phone messages for doctors when G is in pain. Which I cannot say that I recommend, but it certainly got us right in. Her pain seems to be referred to just above her ankles rather than directly in the joint (who knows why), so we are trying to give those muscles and tendons some more support with these fancy braces. She shouldn’t wear them ALL the time as we don’t want her muscles to atrophy, but we are giving this a go. She rides in the big part of the cart if we need to run into Target, and we rent a wheelchair at any sort of mall/museum setting which requires much of any walking (not that we are doing a ton of that right now). I successfully navigated getting her a 504 at school to mitigate time on her feet, and school was really helpful about that. But we are definitely struggling with chronic pain and quality of life. So, two main bits of news:
1. Her Orthopaedic doc (our second opinion) wondered about a possible soft tissue disorder given her history. The last system to check that hasn’t already been treated would be her heart. Yikes. But never fear- we saw the pediatric cardiologist and her echocardiogram and EKG were CLEAR! WOO! But we still have no idea if she really has a connective/soft tissue disorder. We could go see a geneticists and have lots of tests done if we really, really want to know, but I’m not sure it would change anything for her at this point. So, scariest stuff was ruled OUT! Yay 😀
2. Our pediatrician is sending us to the Phoenix Children’s pain clinic to help manage chronic pain and to see if anything is happening either nerve-wise or nervous system-wise. This chronic pain may be making her whole body overreact. She recently had some baby teeth pulled (I know- poor her!) and although she was numb and with a great dentist, she reported feeling “the worst pain of her life” which was a red flag to our pediatrician. We are also getting a third opinion on her ankles with a PCH orthopedist foot/ankle doc.
I can confidently say that we are pretty sick of attending doctor appointments, but I can only feel grateful that we have the means to do so. Seeing our kiddo in pain is super hard. I do well when there is something I can do about it. This is one of those weird instances where we know what the problem is…. Mostly. But there’s not a lot we can do to treat it. Or maybe we just haven’t found that piece of the puzzle yet. Ya’ll know I won’t quit until we find it. Also, I’m 100 years old now 👵 😂
But I’m an optimist, darn it, so I shall leave you with some fun shenanigans. Before we got quarantined in the midst of a school COVID outbreak (that’s not the fun part), we made it up to canyon lake and have been trying on our Halloween costumes 🎃 😆