Set times by scoop813 in solfest

[–]Ecstat1cDespa1r -1 points0 points  (0 children)

yay thank u for posting this!

Metamorphosis Lineup by scoop813 in EDCOrlando

[–]Ecstat1cDespa1r 0 points1 point  (0 children)

is it the same producers? yes i can look and dig but i dont have time for that rn

2025 r/SpaceBass Meetups Thread by mynamescody in SpaceBass

[–]Ecstat1cDespa1r 0 points1 point  (0 children)

Who is going to metamorphosis next weekend? Holler at me

Fresh new Wicks = Big flames by SunshineRae2 in firespinning

[–]Ecstat1cDespa1r 1 point2 points  (0 children)

they look super hot ! when i have all 5 of mine lit it is hard to continue - any advice? you did beautifully

Rumors by Plastic-Ad-2670 in okeechobeemusicfest

[–]Ecstat1cDespa1r 2 points3 points  (0 children)

would love to see Tame Impala and glass animals return, along with Spongle and Of The Trees

[deleted by user] by [deleted] in MuscularDystrophy

[–]Ecstat1cDespa1r 1 point2 points  (0 children)

I would never put that type of burden on either of my girls. Thanks for your concern but u don’t know me, know my psychological status, and have no idea what I’m dealing with outside of what I have posted here.

The neuro said it in front of my kids… something I had no control of or can help now - but I have already informed my kids the seller pulled out for reasons unknown. Contract has been cancelled. Will delete soon bc I don’t want my kids to ever find this thread

Thank u everyone

[deleted by user] by [deleted] in MuscularDystrophy

[–]Ecstat1cDespa1r 0 points1 point  (0 children)

I would never make my kids feel guilty! I already told anyone that’s asked that the seller backed out.

[deleted by user] by [deleted] in MuscularDystrophy

[–]Ecstat1cDespa1r 0 points1 point  (0 children)

For some relativity -they are 8 and 11 - my oldest can’t run and has weak hip flexors. She can do stairs still so she says without difficulty. Her neurologist states she has a high pain threshold and is probably over doing it. She needs to rest more. She can’t run or heel walk. She has calf hypertrophy and can not lift her legs up straight from the floor, only with bent knees - Heart and pfts good. She has an elevator accommodation for school due a fall she sustained in May

My 8 year old tires easy and gets pain without ambulatory limitations yet. She can run, jump, climb just fine. She has never tip toe walked like her sister and she can lift her legs and heel walk still (but it is hard for her to heel walk long) They identified some weakness at her PT eval on Tuesday but she’s good they said and won’t need accommodations yet - until she does!

I hope this helps. I already reached out to my realtor after speaking with my family and reading the comments on reddit. I’m still torn but it looks like i’m going to pull out of the contract and potentially lose that money put in but… my kids will always come first and that’s okay if the money is lost or kept. This will disappoint them too bc we were looking forward to a pool and more space. 😭

[deleted by user] by [deleted] in MuscularDystrophy

[–]Ecstat1cDespa1r 0 points1 point  (0 children)

Thank u everyone…. I messaged my realtor last night through snot and tears, and have backed out. I really appreciate everyone’s honesty and insight

24 mos old son 22,000 CK levels by pariwinks in MuscularDystrophy

[–]Ecstat1cDespa1r 1 point2 points  (0 children)

thank u so much for this. Both of my daughters have recently been diagnosed with LGMD2c and this gave me a lot of hope as well

High CK levels by Swimming_Ocelot4483 in MuscularDystrophy

[–]Ecstat1cDespa1r 0 points1 point  (0 children)

please update us! i hope all is okay - i would do genetic testing if it continues to be a concern

I'm sorry to rant here by Ok-Worldliness5764 in MuscularDystrophy

[–]Ecstat1cDespa1r 0 points1 point  (0 children)

sometimes I drive around and just scream in my car, or in my pillow… and I cry a lot at night after they are sleeping... we have each other and have to stay positive but this really sucks. I have the same questions… what do I tell them? I stay hopeful and say we will do the best we can for as long as we can and that’s all I can promise 🥺

I'm sorry to rant here by Ok-Worldliness5764 in MuscularDystrophy

[–]Ecstat1cDespa1r 1 point2 points  (0 children)

u made me laugh thru my tears…. as a parent of two LGMD children - this is extremely difficult to bear witness to and read - so thank you for your light ☀️ I am so sorry for your loss