-
Krystal replied to the topic Are you going to send your child to school? in the forum SMA Parents and Caregivers 7 months, 4 weeks ago
My daughter is 2.5yrs old and we aren’t planning to take her back to daycare anytime soon. As much as we enjoy her learning social skills from other kids her age, I don’t think it’s worth the risk right now.
-
Krystal replied to the topic Success Story Accessing Zolgensma in the forum Zolgensma (AVXS-101) News and Information 1 year, 7 months ago
My daughter dosed with commercial Zolgensma earlier this week. The process was simple for us, but I think it was due to the road that was paved from other families that fought hard for coverage.
-
Krystal replied to the topic Potty Training and SMA in the forum SMA Parents and Caregivers 1 year, 7 months ago
OF course I read his books! 🙂 It has helped me feel better about my daughter’s future and to remember to laugh and just live life!
-
Krystal replied to the topic Potty Training and SMA in the forum SMA Parents and Caregivers 1 year, 7 months ago
Thanks for your post! Perhaps I have a dark personality, but I thought your comment was funny so I didn’t think your humor was “dark” 🙂
-
Krystal replied to the topic Parent Columnist Writes About His Daughter’s Sleepover in the forum SMA Parents and Caregivers 1 year, 7 months ago
I enjoyed this post. It gives me a lot of hope for my daughter in that there will definitely be things that she will be able to enjoy, “just like any other kid.”
-
Krystal replied to the topic Caring For Someone With SMA is a Full-Time Job in the forum SMA Parents and Caregivers 1 year, 7 months ago
I agree with this post. It’s hard. SMA sucks, despite the great treatments out there. No matter what, my child still has SMA, and will forever have it. We have been told over and over, “If you don’t use it, you lose it,” and I feel like this is correct even with treatment. Because of this phrase, it’s been hard trying to balance letting my child…[Read more]
-
Krystal started the topic Potty Training and SMA in the forum SMA Parents and Caregivers 1 year, 7 months ago
My Type 2 daughter is 19-months old. She is currently in diapers. She tells me almost every time whether she’s peed or pooped AFTER she’s done it. Her diaper is also dry after her daily nap and she doesn’t need a change at all throughout the night. I wanted to know when is the best time for potty training, and how your parents got you potty…[Read more]
-
Krystal replied to the topic The Correlation Between Aides in School and Caregivers in the forum SMA Parents and Caregivers 1 year, 7 months ago
How did you get aides for school? I would like to enroll my daughter into an early start program when she turns 3 (assuming that this is an option for her), and I wonder how to get an aide to help her with the physical disabilities. I have heard of some families having a hard time convincing the school that their child is not mentally disabled and…[Read more]
-
Krystal replied to the topic Growing Our Family After SMA in the forum SMA Parents and Caregivers 1 year, 7 months ago
Thanks for sharing this post. I am somewhat in this situation. My daughter is 19-months-old, with Type 2. My son is 7 weeks old, and fortunately, he is a non-carrier. We did not know my daughter had SMA until during my second pregnancy. I had always thought of having 4 children, but my husband wanted only 2. Before my daughter’s diagnosis, he had…[Read more]
-
Krystal replied to the topic Parent Writes About Bathroom Accommodations for His Daughter in the forum SMA Parents and Caregivers 1 year, 7 months ago
I definitely have questions about this. My husband and I plan to move to a bigger home in the near future, and will probably have questions about how to remodel the bathroom. I think ideas I’ve seen from other families that have been helpful are floating sinks and a roll-in shower. I’m assuming having a bath chair or some kind of seating area in…[Read more]
-
Rachel Markley and
Krystal are now friends 1 year, 7 months ago
-
Krystal replied to the topic Protein consumption and SMA in the forum Spinraza 1 year, 7 months ago
I agree with you. Everyone, SMA or not, is different, and one diet may not work well for you even though it works well for someone else. Since my daughter is still very young, she is not on any special diet, but we are definitely trying to get her to eat high-calorie foods because she’s starting to get so thin!!
-
Krystal replied to the topic Protein consumption and SMA in the forum Spinraza 1 year, 7 months ago
Thank you for this tip of grinding up your meat and using Mayo as a binding agent! I think that’s a great idea and I will definitely utilize this for my 19-month-old Type 2 daughter. We currently give her baby food meat that’s store-bought and she eats it well, but I wanted to find a way to give her meat that my husband and I make. Your idea…[Read more]
-
Krystal replied to the topic Anxieties of Getting New Equipment in the forum SMA Assistive Technology/Equipment 1 year, 7 months ago
I am anxiously waiting to get my 19-month daughter a Permobil Koala. She trialed the Permobil wheelchairs and felt the Koala was the best one for her. We won’t be expecting the chair until fall or even winter of this year, but I am excited for when it arrives so she can become more mobile during long-distances! But when that happens, it will be…[Read more]
-
Krystal replied to the topic Hi Everyone! in the forum SMA Forums Welcome Lounge 1 year, 7 months ago
Hello Rachel,
It’s nice to virtually meet you. My daughter is probably one of the few youngest members on this site. She is 19 months old with Type 2. I am honestly here to build relationships with the older SMA population so I can prepare my daughter for the future and learn more about SMA and how it affects daily living. We live in the Dallas…[Read more]
-
Krystal started the topic Zolgensma (AVXS-101) Provisionally Approved in the forum Zolgensma (AVXS-101) News and Information 1 year, 9 months ago
<p style=”text-align: left;”>Zolgensma is provisionally approved by FDA. The company now needs to request approval for market authorization (BLA approval).</p>
https://www.novartis.com/news/media-releases/novartis-highlights-company-transformation-catalyst-rich-pipeline-and-strong-progress-strategy-meet-novartis-management-investor-event -
Krystal replied to the topic Upcoming Cure SMA Conference in the forum Raising Awareness of SMA 1 year, 9 months ago
I’ll be attending the conference, So I hope to see you all there. 🙂
-
Krystal replied to the topic Uterus talk in the forum Adults With SMA 1 year, 11 months ago
Hey Emma,
So I do not have SMA, but my 15-month daughter does. I lurk these forums often. I wanted to let you know that although I do not have SMA, lots of women without SMA experience your menstrual symptoms, to the point where it is very life-draining and very difficult to manage daily activities. You can certainly take the pill every day…[Read more]
-
Krystal replied to the topic Newbie here! in the forum SMA Forums Welcome Lounge 1 year, 11 months ago
Welcome Jennifer! I am a lurker on this forum, as I do not have SMA, but my 15-month daughter was diagnosed a few months ago at 12 months old with Type 2. She never walked, or stand. She can only sit up unassisted. I got here to learn about SMA, to learn about how young and older members of this forum live. I think it’s great to have interactions…[Read more]
-
Krystal replied to the topic Sleep Study in the forum Adults With SMA 1 year, 11 months ago
I heard it’s becoming standard care for SMA patients to get a sleep study, BUT that depends on if the pulmonologist thinks its appropriate. My 15-month daughter recently saw a pulmonologist, and after assessing her and asking me questions about her sleep, he does not think she needs a sleep study at this time because her chest x-rays are clear and…[Read more]
- Load More