@alyssa-silva
-
Alyssa Silva replied to the topic What does Rare Disease Day mean to you? in the forum Adults With SMA 3 weeks, 4 days ago
Also here’s an awesome video our company made for RRD. Check it out!
-
Alyssa Silva started the topic What does Rare Disease Day mean to you? in the forum Adults With SMA 3 weeks, 4 days ago
Hello all my rare disease pals! Happy day to us. I know we all have different perspectives about awareness days and am curious:
What does Rare Disease Day mean to you?
-
Alyssa Silva started the topic Having problems posting in the forums? in the forum Adults With SMA 3 weeks, 5 days ago
Hi all. A couple of members have brought to my attention that they’re receiving a critical error message whenever they try to post in the forums. Just wanted to share that we are working to resolve this problem behind the scenes! If you’re having issues too, please shoot me a message by clicking on my name. Thank you for your patience!
-
Alyssa Silva posted a new activity comment 4 weeks, 1 day ago
Can you try posting again? Tech just made an adjustment.
-
Alyssa Silva posted a new activity comment 4 weeks, 1 day ago
Hey Blake. @tny9981 is having the same problem. Tech recommended clearing out your cookies but note that it will remove your passwords on autosave. Let me know what you choose to do. We’ll get this sorted for you.
-
Alyssa Silva replied to the topic Do you get discouraged when you’re told all that’s wrong with your body? in the forum Adults With SMA 4 weeks, 1 day ago
Ever since I got my feeding tube (and have stayed hydrated as a result), they’ve gotten my veins on the first stick for every blood draw. It’s a bloody miracle. 😉
I’m not sure what my next injection will be like. I want to say that they saved the images so that I can go back to the OR and resume getting them done there. That way the doctor wil…[Read more]
-
Alyssa Silva replied to the topic Do you get discouraged when you’re told all that’s wrong with your body? in the forum Adults With SMA 1 month ago
It’s for my Spinraza injections. Glad to see you’re able to post again!!
-
Alyssa Silva replied to the topic Welcome Our New January Members! in the forum SMA Forums Welcome Lounge 1 month ago
Auntie life is the best! We’re so glad you’re here Kayla. 🙂
-
Alyssa Silva replied to the topic Does your feeding tube have ENFit connectors? in the forum Adults With SMA 1 month ago
Definitely hang onto it so you’re not blindsided during the transition!
-
Alyssa Silva replied to the topic Does your feeding tube have ENFit connectors? in the forum Adults With SMA 1 month ago
Yes that definitely sounds like what I need! The fact that someone had to create an ENFit wrench just goes to show that this connector was not designed properly lol. Thank you for the recommendation though. I’m going to go buy one right now!
-
Alyssa Silva started the topic Do you get discouraged when you’re told all that’s wrong with your body? in the forum Adults With SMA 1 month ago
Last week. I had the easiest spinal tap ever (I’ve had 20-something!) and am still glowing about it.
Back in October, I had the spinal tap from hell. It took almost 2 ½ hours, and it was excruciating. Even my doctor was so discouraged by what I went through. He explained that my scoliosis inevitably got worse and didn’t know how much longe…[Read more]
-
Alyssa Silva posted a new activity comment 1 month ago
Hi, Yuri. Welcome to the forums! I’m Alyssa, one of the moderators here along with Kevin and DeAnn. Just wanted to say hello and welcome you. Feel free to introduce yourself in this forum, and please don’t hesitate to ask any questions!
-
Alyssa Silva replied to the topic Welcome Our New January Members! in the forum SMA Forums Welcome Lounge 1 month ago
Thanks for introducing yourself Kayla! Fun fact: Fall Out Boy was my first-ever concert. 😆 It was more to see the opening bands (Panic! At The Disco and Motion City Soundtrack), but FOB was awesome too!
-
Alyssa Silva replied to the topic On screen keyboard for Mac in the forum SMA Assistive Technology/Equipment 1 month ago
Hi Scott. Unfortunately, I just use the regular Mac keyboard too and don’t have any suggestions. I feel like this is a good question for @blake so tagging him here!
-
Alyssa Silva posted a new activity comment 1 month ago
Hi, Scott. Welcome to the forums! I’m Alyssa, one of the moderators here along with Kevin and DeAnn. Just wanted to say hello and welcome you. Feel free to introduce yourself in this forum, and please don’t hesitate to ask any questions!
-
Alyssa Silva replied to the topic Does your feeding tube have ENFit connectors? in the forum Adults With SMA 1 month ago
Thanks for the great tips, Scott. I think I’m going to like the ENFit a lot better too. Because I just have an NJ, it gets sluggish quickly and the syringes always spray back at me. I think the ENFit is going to give a better hold. I guess we’ll see!
-
Alyssa Silva started the topic Does your feeding tube have ENFit connectors? in the forum Adults With SMA 1 month, 1 week ago
I recently got a new NJ tube that had the new ENFit connectors. Don’t even get me started on how unprepared I was for it. I wasn’t told anything about it, so I didn’t have any syringes to administer meds. Thankfully, the hospital sent me home with a short supply but even they said they were blindsided by this transition.
That was the least…[Read more]
-
Alyssa Silva started the topic Welcome Our New January Members! in the forum SMA Forums Welcome Lounge 1 month, 1 week ago
`Hi all! DeAnn and I thought it’d be fun to start introducing our new members every month so we could all get to know each other better and grow closer as a community. We’re getting a late start here, but here are our new January members!
@carolyn
@andrearenea29
@mimi
@eric
@selounav
@auntiekay
@nickkova
@thechazhaydenTo our new members, we’…[Read more]
-
Alyssa Silva replied to the topic I Got a Puppy! in the forum Adults With SMA 1 month, 1 week ago
Thank you! And you’re absolutely right. Picking the right breed should be a huge factor in the decision-making process as well. Temperament is so important. I never expected rottweilers to be mellow. Good to know!
-
Alyssa Silva replied to the topic I Got a Puppy! in the forum Adults With SMA 1 month, 1 week ago
I’m surprised you received backlash for something like that! How awful. It’s no one’s decision to make but yours. But yes. It is A LOT of work. Stella is crazy. We’re a little tired and overwhelmed at this point, but the love and joy she brings us are too good to pass up. Thankfully the puppy stage doesn’t last forever. 😅
- Load More
