Well that's our first PANDAS awareness day event over. Thank you to each and every one of you who came to help & support us, we really really appreciate it. (It was possibly for the best that I was running around like a headless chicken today, it helped distract me from thoughts of last night). It was a great night, the Samba band were class! I'm already full of plans for next year :-) As I sit now, on my own, thinking about the day, thinking about how far we have come, how far we have to go. Thinking about our journey up to this point, thinking about the family and friends who are there to support us at every turn, at every event, every crisis, you know who you are! I'm so grateful for that unfailing love & support, we would not have come this far without you all. Lots of people were asking me tonight, "how to you keep going Natasha?", "how do you do it?" Someone sent me a quote recently that reads "You don't realise how strong you are until being strong is the only choice you have" I whole heartedly concur. Annie is asleep, my darlin is on a well deserved trip to see his 'Wee Country' play, Cameron is with my mum & dad until Sunday. I'm heading to bed now, wake me on Sunday about noon! Nite nite. Xxxx
0 Comments
I feel punch drunk today, the morning after the night before. We are making progress, we are moving in the right direction, we have 4 hospital consultations lined up for next week, we are now able to use the knowledge & treatment plan from our USA trips to forge ahead. I've always known there is no quick fix for this condition, I know it'll be another couple of years moving through different treatments before we are coming out the other side. It's just when you have nights like last night you, the full realisation of continuing to manage him while treatment is ongoing is fully laid out in front of you............ A point to remember - he won't allow me to hug him or provide any comfort to him when he's like this. (Go to the video footage page on website to view this clip) Starting World PANDAS day of with a heavy heart..... Cameron had the worst night he's had in over a year last night.......the pain, the distress, the sheer terror & angst, the complete torture that was in his eyes is haunting me this morning. I'm trying to focus myself on the task ahead. But I'm in shock that the horror nights we experienced last year have come back. It's frightening me..... It was so bad I had to call for help, I feel like I've been through a high spin cycle and spat out this morning. These are snippets of last night, I will warn that they are distressing but make no apologies for posting. A point to remember - he won't allow me to hug him or provide any comfort to him when he's like this. (Go to the video footage page to view this clip) Stapling into the wee small hours! Leafleting the local schools today & tomorrow about the event on Friday :-) This is not primarily a fundraising event, it's an awareness event. My mission in life now is to change the journey and make it better for those families coming behind us & in order to do that we need to get the word out there about PANDAS. And it's good to be giving something back for all the support we've received. So pop in for 10 mins, listen to the Samba band, get a glitter tattoo and have your picture taken with a minion - while learning a little bit about PANDAS 💙 Our boy was well and truly cheered up today, when he got to meet Rory McIlroy !!! A selfie for the wall :-)) Life is just too much for him today..........he has spent most of the morning just sitting on the sofa crying..........distressed by everything....... We've had to send Annie to a friend's to stay for the night because he just couldn't have her near him. 'Life with PANDAS' It's all been too much today.......I want to close my eyes and forget about all that makes my heart so heavy. Hopefully tomorrow will be a new day. Thank you all for being there for me when it all gets too much. You all are my cathartic release. It makes a difference to know there's someone out there listening. Xx Our boy has not had a good day, he's continuing to battle sky high strep levels, and these are now taking their toll. Our treatment plan is progressing but it takes time. We should be used to this now because PANDAS = waiting. He's been so distressed all day, and his distress has really highlighted to me today the difficulties he has. It was 3 very ordinary & everyday tasks/conversations that put him into a spiral. Unfortunately we are still out of our house, the repairs will take another 5 weeks at least. However, our temporary accommodation is full this weekend with prior bookings so we've had to pack everything up and move out (AGAIN - I'm a pro now!! Lol) however he has not handled this well. We have come to the cottage for the weekend. Arrival at the cottage, brought another crisis that broke the camel's back. As he sat with his head in his hands sobbing, I just looked at him, so frightened, confused and distressed, and I honestly felt physical pain...... Because we have got used to adapting our daily lives to coping with PANDAS, (what we can & can't do. Where we can and can't go. What we know he'll cope with and what he won't) you get led into a sense of false security. Then, when things crop up that you have to deal with (I'm talking everyday things you take for granted that we try to stay clear off as much as possible), as much as you try to approach them cautiously, trying to protect him, it's not always possible. For example, his brain sequencing has been badly affected by his brain injury, some of the tasks he has great difficulty with are - he cannot put clothes on a hanger, fold them or pick clothes out. Attempting any of these will put him in a terrible state. We have installed a bookcase in his room where his clothes can be kept so he doesn't have to use the wardrobe or drawers. Even when he's having a good day, I'll say to him do you want to pack your bag for Nana's? Thinking, he's having a good day, he'll manage it. However minutes later, he's in a terrible state, I'm unable to calm him and he's either punching me, heading for the knife drawer or trying to throw himself down the stairs......... Today's 3 triggers were 1. A conversation about organising my birthday present. 2. Choosing & packing clothes for the cottage. 3. The grass at the cottage being waist high. It would take you to see the sheer panic, fear, distress & pain that these 3 situations created for him, before you would believe it. Unfortunately, after the 3rd crisis, he's started to become physically aggressive and I had to sedate him........ this is the point of no return, he's too big now for me to restrain him on my own and I have Annie to consider so it's my only option. I honestly don't know how we would manage him without the drug regime he's on......... "My everyday life with PANDAS" xx I've just got my wee man settled, after administering more medication and sponging him down. His head continues to be sore so I'll contact the docs at neurology tomorrow and see what they say. Thank you for your prayers. Xx It would be really good to get some prayers for our boy tonight. He's in a terrible lot of pain, he can't keep his head up because there is so much pressure in it, he feels it's going to explode and he's too weak to walk because of the pain in his legs and feet. He's running a low grade fever. It's not possible to give him his sedation in this situation because I need to monitor him. It's very possible we'll head to Children's Casualty in the next couple of hours. I'll keep the blog updated. Xx |
AuthorWrite something about yourself. No need to be fancy, just an overview. Archives
December 2015
Categories |