Esther Knott to Praying for Ethan
3 hrs
Friday 3rd November 2017
Hi friends,
Just an update and a prayer request please.
Ethan is doing pretty well at the moment and has taken injecting himself daily all in his stride. He has had continued problems with walking and we finally have the MRI results of his back and hips. He definitely has problems and there seems to be change and damage caused by the huge amount of steroids and immune suppressants used over the past few years. We wait now to see the orthopaedic doctor as to what happens next.
Next week we spend a few days at GOSH for lung function tests along with an operation to remove his PEG (percutaneous endoscopic gastrostomy) and put a new larger PEG in its place. This is vital for Ethan to have all his medication and majority of his fluid intake put through here. I am concerned as the last time he had this done he was in a lot of pain for some time.
Blessings xx
P.s the picture shows Ethan still giving the walk to school a go even on this misty day.


Esther Knott
Admin6 hrsBath
Friday 6th October.
Hey everyone thought I would update you on the fun stuff of this week.
It's feel alive Friday!
Lydia is loving secondary school and I'm so very impressed with her amazing ability to make new friends, cope with the changes, respond to homework and have a good old laugh as well. Sorry, there are no pictures of her. She looks simply beautiful in her uniform (I'm sure her skirt has got shorter though 🤣). You see, she doesn't stand still long enough for her photo to be taken 😜.
Ethan has been home with me as it's Nasal flu vaccination week. All those live bugs around is no good for him at all. Although I was initially pretty fed up at the knowledge of a week off school when he is well enough to go, we've had a good week. Ethan's teacher took the time to visit him and undertake a lesson on two of the days. He has worked hard at all the homework they've given him, we've cooked food, made our own imaginative PE and music lesson. Also he has been chief vet and my carer when I had an accident. I think we both need a rest!
Here are some pictures of our week.



Sunday 23rd September
Thank you for your prayers last week.
Ethan's surgery went really well and I don't think we've ever seen him recover so quickly. We had the nicest surgeon and nurses who made everything so much easier.
Great Ormond Street Hospital is filled with some very special staff and we were able to catch up with past hospital teachers and nurses. Also we were serenaded by two fantastic musicians who gave me goose bumps with their singing and guitar playing. We feel very blessed to be under the care of an amazing hospital.
We were very glad to be home to have cuddles with Lydia, the parting from each other never gets any easier.
Tomorrow we take Ethan back to hospital in Bristol. Richard and I will be trained tomorrow to administer a new drug for Ethan. Unfortunately it involves injections but we hope and pray this will eventually help Ethan.
We are tired, we often feel overwhelmed with the responsibility we have but we know we are not alone. Your prayers strengthen us and we simply keep believing that when we trust God and do good, He WILL bring us through.
Much love,
Esther x
Esther Knott
 to Praying for Ethan
19 hrsBath
Monday 18th September
Hello friends,
It's another week of hospital visits for Ethan. We begin tomorrow in Bristol and then travel to London for a few days in GOSH.
I ask for your prayers as Ethan undergoes an operation early on Wednesday.
Also please continue to pray for Lydia as yet again we leave her for a couple of days (obviously she will be left in the very good care of Grandma). The good news is that she is happy at school and has made some lovely friends who she now walks home with 👍.
Thank you for your continued love and prayers. Much love Esther xxxx



‎Esther Knott



to Praying for Ethan

11 hrs ·  
Monday 11th September
I feel awkward about asking for prayers today, especially as our world is seemingly in a lot of pain.

Ethan spends the day at GOSH today seeing consultants, speech and language, OT and more. Then on Tuesday he has an MRI of his brain. This time he has to stay awake for this procedure.

Please pray that he stays as calm as he can and that all goes well today.
Please also pray for Lydia, she hasn't been well and the reality of secondary school is kicking in. I hate leaving her when she feels slightly wobbly.
Thank you for your prayers,
Much love Esther. Xx

Esther Knott to Praying for Ethan

7 hrsBath

Wednesday 6th September

Yesterday Lydia had her first day at secondary school. She liked it a lot and amazed me with her mature attitude towards all that came her way.

Ethan starts school today and he was so very nervous. Anxiety has become a real issue for him this summer but we are blessed that he is attending a fantastic special needs school.

Anxiety seems to have settled in our house of late. I am suffering with this new and intense feeling of being in a fog most of the time. This morning I had to convey Ethan's medicine routine and more to his new teachers. To say I struggled is an understatement, I've seem to have lost the ability to remember words and speak! They were so nice and helpful, again we are very blessed to be so close to an incredible school.
Finally, no school pictures yet but here are some pictures of the completed birthday Lego 👍
Thank you for your kind words and prayers xxxx
Posts from your groups


Monday 4th September
So the summer holidays have come to an end. It's been very busy with lots of lovely memories made.
I ask that you keep Lydia in your prayers as she starts secondary school for the first time tomorrow. I ask specifically that you pray for a really good school friend. Pray she grows in confidence and has lots of fun. 
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Monday 14th August
In hospital with Ethan, he has not been well and struggling with a nasty cough.
He is most upset about being back in hospital. Please pray we will get the right help and Ethan will feel a lot brighter soon. His physical health is really impacting his mental health at the moment, please pray about this. 
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