Last summer (2018) I left my work conference in Washington DC a day early – I took the greyhound home because it was the quickest I could get back. Chris described his symptoms to me…he was crawling up the stairs, his legs were extremely painful – inexplicably painful that he could barely walk. He had numbness and tingling spreading up his legs. Chris went to urgent care where the doctor couldn’t really explain what was going on, but took several gallons of his blood to test for various things including Lymes Disease. The doctor sent him home and told him if it started to spread up his body to immediately go to the Emergency Room. I made it home and it was clear Chris was very ill, with what exactly we had no clue. It was all very worrying.
The next day when Chris woke up the numbness and pain had started to spread to his hands and arms, so we sent Aviana off to daycare and headed to the nearest ER. It was there that Chris was admitted into hospital for tests and observation. The doctors were very concerned and he became that patient that would have had House M.D. appearing at his bed. It was a mystery. Each day they ruled out various diseases with tests and observations, new doctors and specialists appeared with their theories and hypotheses.
It was very difficult for me to leave Chris in hospital and go home to look after Aviana in the evenings. It was difficult for Aviana to understand why daddy couldn’t play with her. The hospital is generally a terrifying place for a toddler, beeps, noises, wires, strange people etc aren’t overall very welcoming. I had friends who helped to look after Aviana whist I visited Chris in hospital. Of course this all happened when our regular sitter was out of town otherwise it would have been a whole lot easier to handle. It made us realise how far away our family is in a time like this. Of course we were all worried.
Eventually Chris was discharged and told it was probably a virus and one of these things that happens. (Ummmm yeh, just one of those things???!) When he became an outpatient Chris had some nerve tests done which confirmed he had nerve damage in his legs…and so was diagnosed with acute inflammatory demyelinating polyneuropathy, also known as Guillain Barre syndrome. It is basically an autoimmune disorder where the body’s immune system mistakenly attack the outside of the nerves and damages the myelin insulation. It is often triggered by an infection of some sort (he had some kind of stomach bug thing a few weeks before), but it can happen to anyone, anytime. They don’t know why it happens. Scary. Chris was told his recovery could take from 6 months to a year. He was off work for several weeks, exhausted as he slowly gained his strength back. He also suffered from a lot of ‘brain fog’ as well, so mentally he has had to build his strength back up before going back to work. There are still unknowns if this would ever come back again (chronic form), but so far, it’s looking promising.
Chris was lucky that this did not spread further to their parts of his body and that the damage did not require him to need physiotherapy nor need much longer hospitalization.
So that’s where I was and where I went to. It was a crazy summer and I decided to take some time off blogging to focus on my family. Then I got busy with learning how to sew and knitting blankets for local families who lose their babies (that’s another story for later).
I miss blogging but I have also been thinking very carefully about this blog and what I write about here. At the forefront of my mind has been Aviana’s privacy, especially after reading an article about a kid asking her mother to stop blogging about her and her mother refusing to. I don’t want to be that kind of parent, but at the same time I want to share my experiences as a parent. So I will return to this blog!
(Ps. the post I posted the other day was SOOOOO old and incomplete, sorry about that- I have a lot of draft posts I have yet to finish! My goal is to finish them within the month!)
Goodbye 2018, you have been full of highs and lows. Hello 2019 – what will you bring us this year??
Happy New Year Everyone!!!!