Super long day today at children’s. But we got a lot done. However the testing we did today was not pleasant at all. But we did it. Today consisted of nerve conduction testing, an EMG, punch biopsies & blood work.
The nerve conduction test and EMG was done on her right arm and leg. The punch biopsies were on the same arm and leg. Blood work was done on left arm and they took over 17 vials 😬 so much blood. Poor girl was a trooper but is totally exhausted
Her blood work is starting to trickle In but some of then testing will take 2-3 weeks for results. The team we saw today was great… They think they might be able to put together more pieces to her puzzle so they ran a few more tests than originally planned
I have anxiety but I tried so hard to do well for addyson today. I knew it would be rough tests so I’m grateful Randy went with. The EMG was the toughest part. Randy and i have both had EMGs so we knew what they felt like. I did good but you could see the pain in her face by the end of it. The tech was like can we do it one more time…. she was strong and with her little voice she said go ahead. The whole team told her how good she did. She let us know she didn’t like that test. We explained that we agree and that hopefully she never needs it done again. Watching your kid go through so much testing is emotionally draining and while I may have switched seats w Randy near the end of the EMG… Together him and I can help addyson through this journey. Some days you just wonder if all this is worth it but then today when the team is like hold up let’s check for x y and z then you regain hope and keep pushing forward.
As a parent this never gets any easier. I think it actually gets tougher for her and for us. I never had anxiety or trauma from any of this before but I do now. Sending your kid to the or so much or spending so much time in the er, or in the Drs trying and trying to figure out these rare diseases is just tough. We have trauma from it and she has trauma from it. But we try not to let our trauma feed into her. I think the trauma stems from all the unknowns….will there will open heart surgery, will she survive, will her seizures stay controlled, will the next appointment bring us worse news. We go into so many appointments thinking it’s a normal follow up. and then we get blindsided by news so now I feel like we have to hold our breath the whole appointment…. And this time testing will take weeks for results so… For now we wait.
I hope one day we all can heal from all of this. I definitely find that talking to our tribe of other medical families helps. They understand this rollercoaster.
Beaming with hope 