Dani's appointments about like we thought the would. With what seemed like a wasted trip and yet ANOTHER referral to ANOTHER specialist. As a parent it is hard to see your child hurting every single day with no way of helping her. To take her from one doctor to another, to another, to another... Only to be told again they don't know what's wrong. A 13 year old girl should not hurt like a 90 year old woman!
The orthotist said that Dani has flexible flat feet which basically means that she can form an arch on her tip toes but when she bares weight on her feet they collapse. Making her very flat footed and her feet turn out. Surgery may be an option but for now we are going to have custom insoles for her shoes to help alleviate pain. This is especially important now that Dani is a freshman and will be marching with the band. We pray she finds some relief with orthotics. Her achilles tendon on both feet is extremely tight and we will address this with stretches after she get her insoles in. If that doesn't help then we may be back to physical therapy. As far as the hip pain goes we are at a stand still. He didn't want to be too evasive because he wanted to wait to see what the endocrinologist said. If pain persists with no answers as to why she will have to have a MRI done on her hips. He did tell us, after taking x-rays, that her growth plates are basically closed but she could possibly grow another inch. This floored me! I mean I am 6' and Daniel is 6'4". How in this world did we have a 5'4" kiddo? Then it hit me! She was only 13 inches when she was born. She was on all kinds of steroids for years due to her lung disease. I'm sure that she has had her growth stunted by that! She was disappointed that she wasn't going to get taller but to us it doesn't matter as long as she is healthy. I mean she isn't really "short" she just isn't tall like us. Turns out it is a good thing that she isn't growing anymore. Pain won't be attributed to growing pains (which means we will be taken serious) and there is less of a probability she could develop dysplasia. So that can be ruled out easily!
We didn't get much further with the endocrinologist as far as determining what she DOES have but we did walk away with some relief know a few things she doesn't have. After blood tests it was determined that she has no worry of a thyroid tumor or any thyroid issue for that matter. This was a big concern of ours! They also determined she doesn't not have celiac and all her other basic ANA and CBC results were normal. She is referring her to another specialist. This time a pediatric rheumatologist. Dani has all the signs pointing to an autoimmune disease of some sort. They are THE hardest things to diagnose but we are a little closer to figuring out what to do for her and hopefully closer to a pain relief regimen. That's all she wants is to live pain free. I hate that she is so very young and even has to think about living the rest of her life with a disease like that. They are brutal and hard to understand. But, we aren't giving up. We never will. She has come so far from that 1 pound 11 ounce baby that failed to thrive without assistance. We aren't quitting for this. Ever.
As far as the vitamin D deficiency goes, it is finally close to where it needs to be and holding steady. Although this could be from our new eating habits and all the summer sun it is still great that her body is soaking it in. We will follow up with her PCP and check it again in a couple months and if it drops to below 15 again then we will have to take her back to Memphis. We were assured that her pain was too great to be attributed to the D deficiency so that is another indicator of the autoimmune disease.
Now, to let it out... We know that so many other people are going through things that make our worries pale in comparison but if you have children I know you understand what we as Dani's parents are going through. I have struggled with guilt for Dani's prematurity her entire life. I still ask myself what did I do that made all this happen to her. I struggle with things going so well and then out of the blue something starts happening that again they attribute to her birth. Just when we think we are in the clear and don't have to worry about preemie complications. I mean she is 13! But, Daniel and I have realized that we can't forget. We can't forget how hard it was having a preemie and all the things she has had to endure in her life. More than Daniel and I together! We can't forget those things because they are thrown in our face with each doctor visit. I often wonder if they didn't know she was a preemie what would they blame her health on? How long until "because she was under 2 pounds" won't come up in a doctor response? We have had a lot more good days than bad but like everything else in life the bad seems to be the hardest to forget. I guess I thought she would outgrow whatever delays and obstacles that come along with being born 3 months early by now. I wonder. Does this have anything at all to do with that or was it by chance that she has health problems at 13? We will never know. I will say this. I will take this battle over what could have been any day! She's here. To us she hung the moon and is the stars in our eyes! We love her and are beyond grateful to be her parents.
Thankfully our entire trip wasn't consumed with doctors. We spent hours playing Uno, Phase 10, Yahtzee and Foosball. We actually enjoyed being away from home, work and the day to day. We even made a short trip to Graceland and walked around a bit. It looks like we have a few more trips in our future and we aren't looking forward to that but we will do it with a smile on our face. I couldn't be more grateful to do it all with Daniel by my side. When I can't hold it together he is there to put it all back in place. He has his work cut out for him some days and possibly should be looked at for some type of an award. :-)