Well, we made it back home!! We had no delays or hiccups along the way! It was still a very tiring trip for me! But I think I made it easier than the going part of the trip!
Going to Ohio picture is on the left. Return from Ohio is on the right! I think it’s fair to say I made improvements while I was gone!
Definitely not feeling 100% even now. But I’ve made progress! I had no clue how hard surgery was going to be! I think I thought I was wonder woman!! But to no avail, despite my best efforts with the wonder woman jacket and everything…I’m really not!! I told my brother tonight there was one thing I could say about that whole trip…it has been conquered! It wasn’t smart to have major surgery and then go. It was not easy. However, it has been conquered and put behind us! At least the traveling part!
Chloe left very discouraged. I think she’s tired of fighting and battling! She wants to be normal. She doesn’t want to have a disease period. But she sure doesn’t want to have one that very few girls have and there are no tried and true methods of dealing with it! She’s tired of trying this medicine and then that medicine. And I quite honestly don’t blame her. I feel the exact same feelings sometimes for her!
But I also am very grateful to have doctors that seem to understand girls with DMD. Although, every girl is different, the doctors in Ohio are not scratching their head not knowing what to do with Chloe. They are very willing to try different things. And I just have hopes that one day they will come across the correct “recipe” of medicines for Chloe and she is simply going to feel much better physically and emotionally.
As of Saturday night, Chloe started yet again a new drug. We didn’t take any meds away…but we added to the mix! So, now we wait and watch. Does she tolerate it? Does it help? Does it affect her emotionally? Those are all questions to be determined!
Can I just say I think this sweet girl is a trooper! She feels bad almost all the time. She deals with pain all the time. And I have been dealing with pain for a few weeks and let me just say I have had enough. I think I complain a lot more than she does!! She just quietly endures! I love her so much!
