Last time I posted, in 2013, my newborn was having GI issues and we were looking for a treatment plan for her. Dot doesn’t seem to have inherited my immune dysfunctions, but she has inherited my propensity for the bizarre and rare.
After we got her GI issues under control, she started having multiple allergies, followed by malabsorption/wonky metabolism of her thyroid medication, followed by pneumonia, followed by a heart murmur, followed by double ear infections, followed by another pneumonia, followed by wheezing/breathing issues, followed by the beginning of gross motor delays…. It seemed like the minute we got her health under some form of tenuous control, another unrelated problem would crop up.
Fast forward an entire year:
We’ve now got a much better understanding of Dot’s sensitivities, of how her health issues interact with one another and of how to help her when she does get unwell. To get to this point we went through seemingly endless battles with her local paediatrician, who I ended up ‘firing’, and managed to get more specialised support for her. I found a paediatric lung specialist who carefully planned the right treatment for her. Many other doctors helped put plans in place for her as needed. Her paediatric endocrinology team is, as always, brilliant. I will be forever grateful to the consultant and specialist nurses who managed to both keep me sane when Dot stopped responding properly to her thyroid medication putting her brain development in danger and who, much more importantly, were able to figure out why this was happening to her and how to stop it. I will never forget getting calls from her NHS specialist at all hours of the day and night on weekdays and weekends so he could update me on Dot’s test results or ask how she was following a dose change.
Dot attended nursery full time, when circumstances allowed, from early on. However in the fall of 2013 we noticed that she wasn’t meeting some of her developmental milestones. After a lot thought I enrolled Dot in a forest school. It is a place staffed by people who have the knowledge to deal with her medical fragilities using a lot of common sense, while putting individualised steps in place to help her reach her maximum potential and include her in all age-appropriate activities. Dot spends the day outside when she is at nursery, surrounded by six acres of woodland, farm animals and lots of muddy puddles to jump in regardless of the weather. No small feat for a toddler with a wonky thermostat and a propensity for hypothermia! The long car journey, 6am wake-ups and daily exhaustion to get to and from there is offset by watching her stretch herself as a result and by how happy she is when she goes there for the day.
My own health isn’t in the best of states, but last year I managed to go back to university for an entirely new career, start work again, survive the year and move forward; all things I never thought possible. The situation is, of course, not that simple or clear-cut and the fact that I’ve survived the year on all fronts is more a testament of my medical team’s abilities and of my mother’s endless support and help than anything else. Let’s not forget that it is because of those two factors alone that I got to see my daughter be born and have had privilege to watch her grow into herself these past 21 months.
And…that’s it for now!