It’s been a full few weeks but overall Eloise has been doing excellently. She’s really made some progress and has turned the corner recently… she has much much, more energy than she’s had for the past 2 years and her sassy character is coming out.
This also means we are dealing with a few more toddler tantrums – for example, she now regularly says to us ‘No, I’m playing’ (because she is). For the first time in years, she’s actually playing of her own volition rather than us doing anything we can to get her to play/do something! This is so encouraging and also interesting both for her and for us….
Eloise’s language is still quite behind but she’s making progress. It’s helpful having a lovely aunt who’s a speech and language therapist 😀. Eloise’s memory and sensory processing for certain things continues to be tricky but has been vastly improving as we wean off sodium valproate.
Eloise has been having a couple of physio sessions each week which has been excellent to build muscle strength. She’s walking further than she has done before which is also great for her independence and confidence too.
And Eloise has been loving her nursery mornings. She is very happy to give us a big hug and wave goodbye. Seeing her love going to nursery and taking it so seriously is such a delight – it’s truly part of her identity. It is clear she feels loved, cared for, and perhaps the closest she has to experiencing a ‘normal childhood’.
It’s also great that we’ve just been told that the Council has approved Eloise being pulled back/deferred a year, in the hope she can catch up a little more before starting school (so she will now start in Sept 2024 rather than Sept 2023). So she has 18 months more of nursery! Yay!
That said Eloise continues to have challenges.
- Her seizures have continued. They are short absences where Eloise isn’t conscious or responsive (they can be a few seconds or sometimes are up to a minute – the longer ones can actually feel quite a long time). They are quite inconsistent too – she might not have any (that we see) for a few days, then might have several in the same day/couple of days.
- Her tremor is also continuing and is also quite inconsistent. Some days hardly there, others it’s pretty bad. It’s always a lot worse after waking up and for quite a while she is very wobbly! Poor girl.
- A meeting we had with the ophthalmologist was positive but there are quite a few issues that we haven’t yet gotten to the bottom of and/or can do much about (in terms of the eye-brain connection).
- We have yet to ascertain how her endocrinology is affected. Her growth has massively been stalled so she’s now very small for her age (she started off very tall!) but we will see if/how that improves over the coming months. There are several areas of the brain that have been targeted by proton/surgery that impact endocrinology – these impact growth, thyroid functioning etc etc. Fortunately, this is an area where there is a lot more that can be done to help.
Each appointment with specialists is odd – they are amazed and delighted that Eloise is defying the odds and doing so well and functioning as she is (she’s walking, talking, eating, chatting, making friends etc.) but at the same time we also have quite a few issues to iron out in almost all medical areas.
Despite all the challenges Eloise lives with every day, she loves life. She is happiest when she and Anna (and Kobe) are at home playing on their hobby horses, making dens, cooking (she loves helping with every single meal), doing crafts and doing various versions of make-believe play. The girls continue to adore each other.
On Friday, Eloise has another MRI under general anaesthetic (GA). This time her shunt is likely to be adjusted to a different pressure if the scan shows low pressure again. She will also have endocrinology bloods done while she is under. After her last GA, just before Christmas, Eloise had approximately 10 seizures the following day (which was odd/scary as she’s had over 65 GAs before and has never had this reaction before!). Please pray this doesn’t happen. We are more aware and hopefully prepared this time, if it does.
For those that pray:
- Give thanks that Eloise is a walking miracle and that doctors and specialists are delighted with how she is doing. In Anna’s words “All the Doctors thought Eloise was going to die, but thousands of people prayed and Jesus saved her! We are so lucky she didn’t die”. (We’ve never directly told Anna this but recently she has started to put it all together in her own way and words).
- Pray for Eloise’s MRI – pray that it shows that she is NED!!!
- Pray that the shunt adjustment (ie adjusting the pressure/fluid in the brain) is ok and doesn’t cause any other issues.
- Pray against any seizures after the GA.
- Pray that the scarring and calcification haven’t worsened and have improved/reduced.
- Pray that all the challenges that Eloise faces (listed above) are dealt with and that Eloise doesn’t always have to live with these hurdles. Pray that Eloise continues to come on in leaps and bounds – pray for full and complete healing.