Hello everyone and we hope everyone had a safe and enjoyable 4th of July weekend. We stayed home and it was nice for me to have 3 days off from work. Nick’s coughing and vomiting episodes have continued even though the air quality has been a bit better here in the valley. He has so many secretions and is requiring suction almost on a daily basis. His spirit is good and we finally have him convinced that if he lets us know right away that he is coughing we can get it taken care of sooner without it getting “real bad” and he can be back in his chair in a shorter period of time than when he waits to tell us.
I’d like to take this opportunity to talk a little bit about the importance of getting and learning how to use a cough assist for those of you in the DMD world. We have had a cough assist for several years now and when we got it Nick hated the “vacuum cleaner”, as he called it. We would practice with it, though not as often as some do, and it sat on the shelf waiting. During the past few weeks the cough assist has saved us. It’s amazing how much “stuff” it pulls up and out. Nick can’t cough it out on his own but with this wonderful machines help he is able to get clear sooner and usually without his oxygen levels dropping dangerously low. If you don’t have one push to get one! Also push to get a suction machine and pulse oximeter and an ambu bag. These devices can be a lifesaver and will most defiantly help to keep you from having to run to the emergency room every time you have secretion issues! We ended up buying our own pulse ox and ambu bag but believe me the benefits were worth the cost. I cannot stress enough to you all how important these items are! As I write this Bob has called me and told me that Nick has had another episode already today. Bob said Nick had so many secretions he could barely speak and within a few minutes of using the cough assist Nick was clear and resting again. So PLEASE, please make sure you are prepared at home.
The other day I was working out in the flowerbeds in the front of our house and Nick was watching me. I was pulling weeds with a long tool I found that pulls weeds without having to bend over. Nick asked Bob what that tool was that I was using. Bob being Bob, told him it was a "nut buster". Nick thought about this for a minute and then said “Can't you ever give me a straight answer? No, you can't, because you have a hamster wheel in your brain". This caught Bob by surprise and he couldn't keep a straight face and burst out laughing. Nick says, "That was a good one, huh Dad?" Bob said, "Yes, that was a very good one."
Steffi is growing like crazy and still wants to crawl in bed with Nick. Last night I attempted it and if I would have had a free hand I would have taken a picture. Nick said he got squashed but he had a big smile on his face. I’ve uploaded a picture video to you tube if you want to see some cute pictures of her and her puppy friends. The link is https://www.youtube.com/watch?v=LPfzO-RTE-I