.... and another vent from me I guess. As some of you know, my daughter has struggled with some autoimmune issues or the past few years. It started with joint swelling and fatigue and ended up causing a rash and some issues with her lungs last year. She was put on steroids, started treating with a rheumatologist, and has actually had a really great summer. We went almost 6 months without a flare up - during which time she excelled in the gym and in pretty much everything she set her mind to.
In October, things started getting rough again. It started with another bad cough. We treated with steriods, albuterol, and antibiotics. When, after a few weeks, it wasn't getting better, the pediatrician ordered a chest x-ray. We weren't even back home from the hospital (where we got the x-ray) when the pediatrician called to say that the x-ray had shown some concerning scarring across the upper lobe of her right lung which extended to her heart. Her pulminary function tests came back diminished (she was operating at about 75% of lung function with steroids and albuterol on board.) We've been processing this information, and waiting for an appoitment with the only pediatric pulmonologist in the state, when she started having some unexplained backpain. So we went back in for more tests, and yesterday we discovered that she has blood and protein in her urine. Which means that whatever is harming her lungs is also harming her kidneys. We are waiting for the rest of the blood work to come back but it sounds like the next step is going to be a lung biopsy, which just sucks.
The reason why I'm talking about this here - other than the fact that I needed an anonymous way to talk about this since her dad and I are not telling people what's going on until we have better information, is that she is still intent on going to gym as often as she can physically make it - and it has been so rough! She was cleared by her pediatrician and rheumatologist to continue with gymnastics (in fact, the pediatrician told me she thinks the reason my DD has been functioning so well even with reduced lung and kidney function is BECAUSE of gymnastics - she kept her body so heathly and strong that it can compensate for the systematic inflammation.) I've spoken to her coach so she knows what's going on, but my daughter is such a perfectionist that she won't cut herself ANY slack when she has a rough practice.
Of COURSE she's having rough practices. First of all, she skipped from level 3 to level 5 - that's super tough and any healthy athlete would most likely struggle with that change. Secondly, her body is not working the way it should. If I had growing scar tissue around my heart, lungs, and kidneys I would be curled up on the couch, flat out refusing to cook dinner (haha), this kid is still practicing 11 hours a week at full force, and then feeling upset with herself when she's too tired to finish strong on her conditioning. She's coming home from practice in tears, completely upset and scandalized that her body is not doing what she wants it to, and I don't know how to help her. It's so frustrating, I just wish I could solve one problem for her. Make her healthy, make her feel proud of herself for working so hard even when she's not healthy, help her celebrate her enormous successes instead of always focusing on how she could do better. It can be tough to be a mom, and even tougher to be the parent of a gymnast...
In October, things started getting rough again. It started with another bad cough. We treated with steriods, albuterol, and antibiotics. When, after a few weeks, it wasn't getting better, the pediatrician ordered a chest x-ray. We weren't even back home from the hospital (where we got the x-ray) when the pediatrician called to say that the x-ray had shown some concerning scarring across the upper lobe of her right lung which extended to her heart. Her pulminary function tests came back diminished (she was operating at about 75% of lung function with steroids and albuterol on board.) We've been processing this information, and waiting for an appoitment with the only pediatric pulmonologist in the state, when she started having some unexplained backpain. So we went back in for more tests, and yesterday we discovered that she has blood and protein in her urine. Which means that whatever is harming her lungs is also harming her kidneys. We are waiting for the rest of the blood work to come back but it sounds like the next step is going to be a lung biopsy, which just sucks.
The reason why I'm talking about this here - other than the fact that I needed an anonymous way to talk about this since her dad and I are not telling people what's going on until we have better information, is that she is still intent on going to gym as often as she can physically make it - and it has been so rough! She was cleared by her pediatrician and rheumatologist to continue with gymnastics (in fact, the pediatrician told me she thinks the reason my DD has been functioning so well even with reduced lung and kidney function is BECAUSE of gymnastics - she kept her body so heathly and strong that it can compensate for the systematic inflammation.) I've spoken to her coach so she knows what's going on, but my daughter is such a perfectionist that she won't cut herself ANY slack when she has a rough practice.
Of COURSE she's having rough practices. First of all, she skipped from level 3 to level 5 - that's super tough and any healthy athlete would most likely struggle with that change. Secondly, her body is not working the way it should. If I had growing scar tissue around my heart, lungs, and kidneys I would be curled up on the couch, flat out refusing to cook dinner (haha), this kid is still practicing 11 hours a week at full force, and then feeling upset with herself when she's too tired to finish strong on her conditioning. She's coming home from practice in tears, completely upset and scandalized that her body is not doing what she wants it to, and I don't know how to help her. It's so frustrating, I just wish I could solve one problem for her. Make her healthy, make her feel proud of herself for working so hard even when she's not healthy, help her celebrate her enormous successes instead of always focusing on how she could do better. It can be tough to be a mom, and even tougher to be the parent of a gymnast...