So the last week has been quite challenging and upsetting. Unfortunately Eloise’s trembling has worsened so much so that at times she is often struggling to walk and keeps tripping/stumbling or just falling straight on her knees. She has sometimes started scooting around furniture again.
After sending a video of Eloise trembling to the Epilepsy consultant and neurosurgeon, Eloise was immediately admitted to the paediatric ward at the Royal Surrey. Unfortunately only one parent was allowed on the ward due to Covid, so Pete waited downstairs. Lots of lovely Dr’s and nurses checked Eloise out but Eloise got so upset every time anyone got near her. They did checks to ensure she wasn’t in ‘urgent danger’ and also took some more blood tests etc. In the end they concluded that Eloise now has a ‘tremor’ – but as of yet don’t know the cause, and there are so many factors it could be. We returned home, rather exhausted after another very unhappy visit – Eloise is literally just at the worst age for all of this, as she just gets so distressed no matter what Dr’s and nurses do. We couldn’t fault their care on the ward and are very grateful for their support and help.
Unfortunately Eloise’s seizures remain similar (slightly less today – approx. 9 but typical ~12+).
Following the hospital visit, the neurosurgeon has decided to bring forward Eloise’s brain and spine MRI to this Wednesday 27th at St Georges.
This Monday (25th)/tomorrow we will also be at St Georges as we have an appointment with the Endocrine (hormone) specialist, followed by an appointment with Eloise’s Neurosurgeon. We then need to get our Covid swab tests done, so Eloise can have her MRI under general anaesthetic on Wednesday.
How do we feel?
- This last week has been incredibly upsetting – it is awful to see our daughter who walked at 10 months, be so unsteady on her feet. You don’t really expect to see your child ‘regress’, especially so quickly. She has points in the day where she is ‘better’ (but not ‘normal’) and other points where it is particularly difficult (e.g. for 1 or 2 hours after waking in the morning/from her nap).
- We feel really, really grateful that Eloise will have an MRI on Wednesday, especially when we know so many people are having theirs cancelled. It breaks our hearts to hear of others having theirs cancelled. But we equally have anxiety around this MRI and the need for it… We are really hoping it will bring clarity to the situation, because at the moment the many unknowns make this particularly hard.
- Unsurprisingly, Covid is making the situation harder – it really is an odd time for everyone. It is hard not being able to do things to cheer ourselves up and get out of the house, or to do something to mentally escape the situation. It really does feel like there is little reprieve (especially, at times, for Anna too). But we all feel like this in many ways! We are making sure we take the girls out each day for a walk no matter what the weather and are spending quite a bit of time in the garden, even if it is raining 😊. But we look forward to the warmer Summer months!
- The situation is not without hope but at the moment it is without encouragement.
For those that pray:
- Pray that the appointments with the Endocrinologist, Neurosurgeon and MRI go well – both logistically and that the various consultants are able put more of “the jigsaw” together.
- Pray that Eloise’s seizures and tremor reduce and ultimately stop. (Since we drafted this blog on Friday eve, Eloise has actually had a couple of better days but it is all very inconsistent).
- Pray that Eloise’s MRI results show that the tumour has not grown and ideally, reduced in size.
- Pray for protection and peace on Anna, as Pete, Mel and Eloise will be out of the house a lot this week and she will be eager to know we are all ok.