Just a glimpse of the things we live with all the time. You never know what your day will hold. Chloe wasn’t at her best last night. Feeling very tired and emotional. But what happened this morning was not what anyone expected. I get this text message that says mom I can’t walk. Huh? What do you mean you can’t walk? And really she meant…she couldn’t walk.
One of the bad parts of having a child that struggles with anxiety and that is as a mom you must learn to show like no emotion. If I had allowed her to believe for a moment that I was concerned, she surely would have thought she was going to die in 5 minutes. Trust me, we’re not speaking negatively of Chloe. She will tell you the same thing. Living with anxiety and depression is just a terrible thing!
We have been having days where Chloe doesn’t walk very well, and that is part of the disease. But then it seems that Chloe will perk back up and not be bothered for awhile. She is constantly stretching her leg muscles to keep them working for as long as possible. But this morning, it was far worse than I had ever seen. It just seemed a bit odd to me that you can go to bed just fine and wake up and not move. Hmmm….what’s a mom to do?
I wasn’t really scared. But a bit concerned because I wasn’t sure what was going on. So I simply told Chloe I thought it was related to some medicine we had just changed. We are in the process of weaning her on one type of medicine with the hopes to reduce some of her other medicine to see if that helps her movement disorder all while trying to get Chloe to where she does not hurt. Yes, I know that sentence was long and crazy. Welcome to my world!
I took a little video and continued to encourage her to just try to move around and see if she couldn’t work the tightness out! Stretch those muscles. Go clean your room….I’m sure that will help you loosen up! But there was still this little uneasiness in me. So I emailed the video to her doctor in Ohio. The mom, who just said go clean your room I’m sure that will help you loosen up, sent an email to the doctor with the subject line HELP!!!
Within an hour or so I had a response. I could have never got our local doctors to respond that quickly. The pediatrician is not even that fast most of the time! I am now sold on the doctors and hospital in Ohio! We are definitely in good hands there! And even more so, when the doctor responded the first two sentences were thanks for sending the video and then how scary to not know what’s going on. I love how before they even gave their medical opinion they validated my concern. But then the doctor went on to say with great confidence what Chloe was experiencing was a drug induced ataxia. Since we had upped it on Tuesday, it was a side effect that she was experiencing. They felt very confident and eased my mind greatly. It should only take her body three or four days to adjust. So tomorrow or Saturday we should see an improvement. Crossing our fingers and saying our prayers!
Days like today remind me that this is not going away. We will always deal with things like this. As a matter of fact, one day this walk may not go away. It might be here to stay. And if it’s not this, it very likely is something else. Living in a world with muscular dystrophy is not very fun most days to say the least!
Mom is tired tonight. Chloe is tired tonight. Chloe is still hurting tonight. She’s just had a nice hot bath and is now wrapped up in a heating blanket. But her walk has gotten better today. Not 100% better but better than 9:30 when I took the video! So, I am praying that when she awakes in the morning she will be as normal as Chloe gets.
