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Suzi's Status

To keep family and friends updated on Suzi's progress.

Latest journal entry

5/14/18, 3:55 PM

I want to start this post by apologizing since it has been so long since we have updated everyone from here. Since my mom's return home, we have been incredibly busy keeping her clean, fed, and healthy, on top of our already-busy lives of attending classes and going to work. Everything has been going smoothly, however, the first few days home we were struggling with a trial-and-error process to figure out how everything was going to work.

My mom has been progressing significantly faster than she was when she was at Spaulding. We think that this is because she is in the comfort of her own home, sleeping in her own room, and seeing us and countless others way more often than usual. Through our insurance, we are provided several therapists and a visiting nurse to come see her every so often. Her occupational therapist comes twice a week, her physical therapist originally was coming thrice a week but has been lowered to twice, now, and speech therapy was given three visits but is pushing for more. Although this is not as often as she was receiving therapy in the hospital, we are learning how to continue to challenge her on our own, and she also has several friends that are trained in such things. Her friend Kim has been the best therapist of all, using more unique strategies and pushing her far more hard than the others. We especially see my mom's growth after those therapy sessions. Kim has been coming to help with my mom almost everyday and we are so grateful. Her other therapists are okay, but we feel as though her personal connection to my mom really helps my mom feel more comfortable and work just that much harder. My mom is gaining a lot more movement in her legs and in her left hand, and her right hand only continues to get stronger everyday. Proof of my mom's growing strength is shown in how difficult it is getting to dress her and clean her everyday, but how can we complain? The constant therapy has helped her to gain more control over her movements that have also made certain parts of getting her dressed easier, as well. If anyone else is some sort of therapist and would like to help my mom even more, we are interested!

Since my mom has been home, we have also been trying to limit her tube feeding in hopes that it will soon be able to come out. My mom has no restrictions when eating by mouth, however, it takes her an extremely long time to chew things. This tires her out very fast and limits how much she can actually take in. We have been actively working to get her to eat more by mouth so that we can eliminate certain feeds throughout the day. We have already eliminated one of her feeds, but we are still a ways away from getting rid of her feeding tube. She has been eating more and more each day, though. Just yesterday for Mother's Day, we made her our usual French toast breakfast. She ate an entire piece of French toast with strawberries and bananas in each bite. She had bacon on the side and the whole thing was covered in maple syrup. She drank orange juice on the side, too. A meal like this calls for us to skip her breakfast-time feed, which is what we were going for. Getting her to eat like this throughout the day, though, is difficult, especially as she begins to feel tired. We have to be careful that she is not eating too much, though, because she has puked on several occasions. Even with water, if it is given to her too fast, it may cause her to puke.

My mom is significantly more aware of everything that is happening, now, and she is much happier being at home. She was extremely confused when we brought her home, and she would mix up her timelines quite frequently, although she did remember most things. She can still be a bit confused at times, and she still says some weird things sometimes, but for the most part she is aware now. She is talking very clearly now, and honestly, she almost never stops. That's okay, though, because we missed her voice for so long.

We appreciate everyone who has visited us in the last month or has dropped off a meal for us. Brenda put together a sign up genius for when people can come and keep my mom company, which can be found at https://www.signupgenius.com/go/30e0b4fa8a82aa0ff2-suzis1. We will be showing some people who can come more regularly how to give my mom her medications and her feed, and if anyone is consistently free at certain times throughout the week they can let us know because that would be a great help. We will be keeping her cleanings to a smaller circle of people, though, because we don't want her to feel as embarrassed. This will be helpful, though, when we are not always around. It is not necessary to sign up before coming to visit, my mom loves having visitors and we know she is loved by a lot of people who want to see her. Anyone can drop by any time, and we hope to see everyone soon.

-Kaitlin

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