Hi guys! I know I’ve been away awhile and things here seemed to have changed a little and it all looks great!
Just wanted to give an update on my now 12 yo daughter Hope. Unfortunately, she has continued to drastically get worse and more symptomatic. After several months of a specialized PT for her EDS, she was not improving and actually getting worse. Thankfully we love the PT and she has been an amazing advocate for us. She got us in to see Dr. Patel several times during our work with her. After having an upright MRI in Dec 21, we saw Dr. Patel the next day and Hope was put in the schedule for Jan 20. She has terrible CCI and it is both putting direct pressure on her brain stem and restricting her CSF flow. Hope will be having an occipital cervical fusion through c-4. It is a huge surgery but we are hopeful that after recovery she can begin to get some of her life back. I thank each person and especially the moderators who helped me learn about these disorders and show me how to begin the research. It has been the longest 17 months of my life. It has also been the hardest. If I hadn’t found this group, I’m not sure I would have been able to stand my ground and advocate for her the way it was necessary. I cannot thank you all enough! I pray that I can continue to pay forward the strength and encouragement I found here to other parents struggling. I look forward to updating you soon with great news of a successful surgery to correct her instability that may also remove the need for decompression both now and in the future. Happy New Year to you all, I pray it is filled with good health and hope for each of you!
Hey Angel,
Yes, it is hard, it is VERY stressful, but you have learnt new coping skills, new ways to manage along this journey. Don’t forget those skills, they will come in very handy as you continue. That ‘rip your hair out panic’ is normal, but only for a short period. Some people get stuck in that ‘Panic’ stage. You’ve moved on from there and that’s a good thing. You’ve got a confirmed diagnosis, that’s brilliant. Some people go for years knowing there’s an issue, but not obtaining a confirmed diagnosis. Your neurosurgeon has a plan and the plan is being actioned. You can’t really ask for more IMHO.
AND
All of that is down to you ‘Supermom’
You could have fallen to pieces at the first hurdle (Many have), you didn’t.
You maintained your daughter’s appointments and you followed through
You asked questions. You obtained the information you needed and you kept yourself informed.
That’s all down to you.
From here all you can really do is exactly what you have been doing already, be there to support your daughter. From here, the rest of it is up to the medicos.
I do hope/wish/beg that it all goes according to plan. No neurosurgical journey is easy, the stresses involved for all involved can be HUGE. We know that, 'cos we live it too. Please, DO NOT forget about yourself and your own well being. You also need to look after you too Angel, if you burn yourself out doing EVERYTHING for everyone but forgetting yourself, when you are needed in a crisis, you’ll have nothing left to give. Please remember to look after yourself too.
Merl from the Modsupport Team
Such wonderful news to hear about your daughters surgery, not so good news about her continued difficulties. Lots of prayer for you both and your other family members as you prepare for the surgery and afterwards. May you have lots of helping hands and the resources needed for a smooth recovery.
Thank you Merl,
I appreciate your kindness and support. You were very instrumental in showing me the way. I am indebted to you all and am trying to pay it forward by helping guide other parents in similar situations.
You are so right, you cannot pour from an empty cup! I am doing as well as I can and allowing my faith to fill my cup. I am alone with my two children in this fight and unfortunately, my youngest son is now beginning to also show some symptoms. I find relief and fulfillment in helping others so, I suppose that is my way of coping.
I appreciate all your experience and help! I find your support invaluable! I look forward to updating you all with great news after Hope’s surgery 
Thank you as well Gabby!
You openly shared your experience and helped guide the way! I appreciate your kindness and support
Angel, I hope this finds you and your daughter as well as can be. We haven’t heard about her surgery, whether she had it or how it went.
We’re wondering, and thinking of you.
Seenie from ModSupport