The not-so normal Normal

Thank you to those of you who continue to pray and think of Eloise.  We don’t write on this blog so often now that we aren’t in the acute phase of treatment but thought we should do a little update.

The last few weeks have been a little challenging.  Eloise has had a couple of more prolonged seizures, leading to a short hospital admission.  They started off as atypical absence seizures and then continued as partial seizures (they don’t look like ‘seizures’ like you might imagine, so the good thing is that other children wouldn’t notice – she just looks poorly to them) but they are unfortunately quite serious/risky, in both the short and longer term.  Having not had any seizures for approximately 6 months over the summer it appears autumn and infection-season have come with vengeance.  It is very clear that infections are impacting Eloise.

Last week Eloise also had another unexpected hospital admission and stay, which included an urgent CT scan done at 4.30am (to check her shunt wasn’t malfunctioning/infected).  Without going into the complexity of different aspects and symptoms, Eloise is proving not to be a ‘typical case’ with most things.  She is unable to consistently regulate her body temperature (due to proton hitting the thalamus/hypothalamus), and last week her observations in hospital were quite unusual (very high heart rate and blood pressure initially without a clear cause/temperature).  After various tests and antibiotics Eloise is now home and now doing much better.  Another unpredictable and unnerving few days, but she’s ok – for now.

That said, we try to keep ‘the show on the road’ so when Eloise is well she’s been loving nursery, seeing friends and playing.  She continues to be incredibly sassy and funny.  A very funny conversation we had with her recently, somewhat sums up her little character.…

Mummy ‘Eloise What would you like for Christmas?’
Eloise ‘A horse’
Mummy ‘Urr, I’m not sure we can have a horse.’
Eloise ‘A donkey?’
Mummy ‘I don’t think we can have a horse or a donkey, as where would we put a horse or a donkey?  A horse or a donkey need a stable and field.  So what else would you like for Christmas?’
Eloise ‘A field.’

We would be grateful for prayers for a few things:

• For us/Doctors to get a better understanding of how infections impact Eloise and what we can do to prevent infections impacting her neurologically.  What is a ‘normal infection’ for many children seems to have much wider ramifications for her.  We know her immune system, blood-brain barrier, endocrinology system and brain have all been impacted by her tumour and treatment, but we’d be grateful to get to the bottom of some of this to try and see if we can prevent/treat  this.  We really don’t want the infection yo-yo to be the new normal for Eloise – it impacts her quality of life, development and education (and also has some big risks).
• Eloise has a range of appointments coming up – she’s starting a block of physio this week.  Please pray this increases her strength.  Even just the last week of illness and hospital stays has set her back a bit. 
• For Eloise’s EHCP and school placement for next year.  We’d like Eloise to stay at Rydes Hill where she is so happy, has wonderful friends and teachers, feels loved and has come alive.  Please pray that this is possible.
• Pray for overall health – seizure control, her processing speed, for protection for her shunt/hydrocephalus.
• Give thanks that Eloise continues to love life and is incredibly determined.  Give thanks that she has defied the odds, is able to celebrate this Christmas and lives up to her name!  We are so grateful that we get to do life with this incredible, inspiring little girl – even if it comes with challenges.
• Please pray for Anna.  Anna is incredibly resilient with the unpredictability of our life, but it does impact her – she hates Eloise going into hospital and not knowing when she will be out.  Please pray for peace for her.
• Please pray for us.  It’s hard to capture the challenge of unpredictability, weight of responsibility and anxiety of ‘what is going on?’. Life isn’t as challenging as it once was, but its certainly not as calm and consistent as we’d like.  We try to keep the ‘show on the road’ and keep life as normal as possible but some days the stress levels can be a little higher than we’d like them to be. 

This is what a 4.30am CT Scan looks like…