HisGrip, Tools4Life, appointments...
- Elizabeth
- Jun 23, 2017
- 5 min read
I feel like it's been a busy few days since our last post.
We were able to start with home care respite for me on Wednesday, June 14. Our "caregiver" is Wendy. She is from South Africa. Her experience with HisGrip home care seems to mostly be with a previous patient that had a stroke 40+ years ago. She doesn't have much experience with ALS, but really wants to learn. She has been here 3 times for 4 hours each time and the plan is for her to come twice a week for 4 hours in the afternoon. I've been teaching her about the cough assist machine and giving Jason his afternoon tube feed. She has mastered the tube feeding and has started learning what he wants and likes. I've left for an hour or so at a time so far, going grocery shopping and doing other errands. Once she is comfortable doing the cough assist machine, I will feel comfortable going to the park or a movie for the majority of the time she is here. It seems different than the nursing I am used to. She talks about her family and really wants to know about us. Maybe it seems different because she is in our home. It seems like more of a personal relationship between her and us. She works part time, and right now, we are the only ones she comes to see.
We've done some preparation for our trip to Maine. We've purchased a portable 8 foot ramp and we got a phone call on Friday that a friend of Jason's wants to build a ramp at his parent's house. How awesome is this? Tim's (who was in our wedding) brother, Mike, is building that ramp this week in preparation for our trip. We've made sure that we have trach and PEG supplies early for the month of July as well.
On Saturday, June 17, I posted this picture to Facebook of Jason and Jackson watching a storm. I think it has rained daily in the afternoon for 2 weeks! The power wheelchair cannot get wet, so it has limited our outings, but it is so easy to sit in the garage. Jason has always enjoyed just being outside and watching storms, so we are grateful for the garage to still be able to do it. I had a picture of Jason from maybe a year and a half ago sitting on a 5 gallon primer (paint) bucket with a beer in one hand and the iPad in the other grilling on a camping grill. He wanted to grill and it was storming outside, so why not?!? I WISH I still had this picture, but I can't find it. The phone has been telling me storage is full and I've been deleting pictures regularly, so I'm sure it is gone. After the rain cleared, we spent a few hours at the neighborhood pool-oh the party we are glad we didn't miss!
Monday, June 19, we got the Hoyer lift ordered back in February. We have not incorporated it into our day yet for a couple of reasons. We may not be able to have it when we go up to Maine, so I don't want to get too used to it and we need a different sized sling that, which we plan to get next Monday. It works on hydraulics and I think it will sometimes be easier for me to use, but sometimes just make things way too complex. At least we have it so that we don't have to call 911 anymore :)
On Tuesday, June 20, we went to the eye doctor. The doctor asked "what did we do last year?" in reference to the exam room used and getting into the exam chair. Last year, the eye doctor would have had no idea that this was going on. What a difference a year makes, well 6 months. You can look at this in two different ways. The quickness of progression from one year ago to now. We did so much research, we knew what the doctors told us would happen, but in no way could we anticipate what was to come in just a short year. We can (and honestly have) complained about the 3 months it takes to get the power wheelchair, the 5 months it has taken for a lift, what insurance covers versus not, figuring out what to do next since we first went to Emory in June of 2016.
OR (and we prefer looking at it this way) So many appropriate and good things have happened in a year. Selling cars, buying a van, getting a power wheelchair, PEG, trach, lift, adjusting to being at home, adjusting the way Jason works from home, and developing a routine. I remember googling how to freeze fruit for smoothies, what foods were high in calories, buying 15 types of ice cream for milk shakes (I swear there are still 8 types of ice cream in our freezer). I remember searching 30+ thrift stores for a manual wheelchair prior to getting it in order to be able to van shop (many days and many phone calls....because insurance won't cover it if a power chair in on the way...the picture is attached for proof, because I wouldn't believe that number without seeing it!) I remember the respiratory therapist coming daily, then weekly-today it has been more than a month since he has come. I remember figuring out both of us getting to work when Jason could no longer drive and how inadequate I felt. I remember remodeling our bathroom and trying to anticipate the changes that needed to happen to make it usable throughout. So many decisions and changes...
And somehow, we have managed to get all of this accomplished so that we could easily make that appointment. So in just a few months, we are not only living with ALS, but we are thriving. We are not worrying about a simple yearly appointment because we have the experience, knowledge, and ability now. And none of this could have been accomplished without love and support, the overwhelming funds provided to us, and our spirits lifted nearly weekly with all the visitors that have made their way down to Georgia to see us.
On Tuesday, a Tools 4 Life representative, Krista came to our house. She came after hours after a long work day to show us speech generating devices using eye gaze software to prepare for the future. Even though I told her in an email, she has NO IDEA how much we appreciated her coming. It made us so excited for the independence this will provide. Living with ALS cannot be easy, and none of us will truly know, but with this technology, maybe it won't be so bad! It is, of course, a process if we go through insurance. I won't even say the costs, but at least insurance will pay 60% We will have an appointment in August. In the mean time, we will start message banking words and phrases that we can load into the software.I've put many links below, if anyone is interested in what this is all about!
Devices/software we are looking at:
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