The Kaitlyn Diaries

The Kaitlyn Diaries This page is to keep everyone updated.on Kaityns Journey through NPRL-3 Epilepsy and how she's doing

Sorry for radio silence couple of busy days.... appointments left right and centre....All doing well and Kaitlyn recover...
11/02/2026

Sorry for radio silence couple of busy days.... appointments left right and centre....All doing well and Kaitlyn recovering beautifully. She had dressings removed last Thursday and scar is looking remarkably not swollen or troublesome. Weakness in hand has mostly disappeared but still gets tired so is a working progress. Word finding still very much an issue but conversation is coming along very well so all in all shes recovering beautifully and whats more.... no seizures. Still on meds for the first 6 months to a year post op so true result of operation wont be till then but at the moment we have a great deal to be thankful for. Thank you all for your well wishes and prayers. They've worked a treat!

.... and were home!! The journey has however pooped her out and so shes napping on the sofa. (Glasses have gauze round t...
28/01/2026

.... and were home!! The journey has however pooped her out and so shes napping on the sofa. (Glasses have gauze round them for comfort)

All cards have been opened so thank you all so very much for your well wishes.

Bristol Royal Children's Hospital made us feel welcome and have hopefully helped our baby beyond measure.... but its nice to be home with no bright lights and beeping etc to keep us awake.

Stay tuned for rehab at the Butcher Household.... thats the next bit 😬😬😬

So shes being discharged tomorrow with an Occupational Therapy Referral, a Speech and Language Referral but she can see ...
27/01/2026

So shes being discharged tomorrow with an Occupational Therapy Referral, a Speech and Language Referral but she can see now and can walk. She has a weakness in her right hand that needs work and a speech delay.... but she has done so so well that the doctors are happy to send home and treat as an outpatient.

Family Butcher signing off our time at Bristol with a meal and Frozen 2 ( Kaitlyn singing her heart out because muscle memory means she can still sing songs she knows fairly well)

TTFN!!

Update:So..... today has been particularly arduous for the butcher family. Kaitlyn is doing well in all her grosse motor...
26/01/2026

Update:

So..... today has been particularly arduous for the butcher family. Kaitlyn is doing well in all her grosse motor milestones. Walking is definitely down and dusted so very pleased that were up and about....however the speech is still delayed and anyone who knows my baby girl knows that she loves to talk and sing and dance and act about.... all of which are currently a chore for her and makes her so very tired and frustrated. We are still waiting for Speech and Language to show themselves and until they do we're still here. Eyes were most definitely a problem this morning and the Neuro were concerned it was more than just bruising so they have prescribed ibuprofen to try and help.

She also has some weakness in her right arm which we were expecting and so things like holding cups and her knife and fork etc is a challenge. We are waiting for the O.T to come and talk to us about that part.

These are all things however that the Neuro does NOT believe are permanent and will take patience to get them back on track.... not something the butcher family has ever been really good at..... but were all gonna try xx

Kaitlyn has already accomplished so much in her lifetime and has always had to deal with a lot but today was the first time I truly saw her tired of it all.

Im a broken woman.... its so hard to watch your (previously so full of beans) little girl look so sad and disheartened.

Tonight showed some improvement in her mood though if nothing else because she could finally see out of part of her right eye. Below is a before and after..... small victories where we can find them.

If I havent replied to you today then its not personal its just because I havent had the passion or zest to be able to.

This is much easier to update everyone at this time.

Thank you all so very much for your love and messages and prayers today. I very much appreciated them all xx

Very puffy today..... send love and prayers for my baby girl please ###
25/01/2026

Very puffy today..... send love and prayers for my baby girl please ###

Update:My little soldier has had some of the good stuff to get control of the pain ( oramorph) and an ice pack which has...
24/01/2026

Update:

My little soldier has had some of the good stuff to get control of the pain ( oramorph) and an ice pack which has helped bring temp down from 38.8 to 37.6

Right direction little girl.... keep going!!!!

24/01/2026

Update:

So after coming through op with flying colours and being the master of her own bladder and eating and drinking like a trooper..... my baby girl has decided to spike a temp of 38.6

Neurologically speaking shes still fine in that her grip and all is fine. However the temp is concerning as that could be an infection somewhere. She also has a slight swelling on her forehead where she was screwed to the table to keep her head straight. Shes not in the boggy swamp but shes also not out of the woods yet either.

Prayers still VERY much needed xx

Update: Shes in recovery now and She's a bit more awake, but still groggy.. being a bit moody and won't keep her oxygen ...
23/01/2026

Update:

Shes in recovery now and She's a bit more awake, but still groggy.. being a bit moody and won't keep her oxygen mask on. Her oxygen levels dropped a bit because she wouldn't keep mask on, but shes calmed down, and although shes a bit sleepy... o2 levels are sitting nicely between 92-94.

Shes moved her right arm and hand to scratch her nose and wiggled all four limbs.... so despite accidentally pulling her bandages loose and having to have it redressed.... she should be on her way up from recovery soon.

Thats it shes off to the land of nod and were at the mercy of God's hands now xxPrayers and well wishes welcome
23/01/2026

Thats it shes off to the land of nod and were at the mercy of God's hands now xx
Prayers and well wishes welcome

Well we've arrived and are now all settled in. Trip up to Bristol was fairly uneventful minus the hour delay because of ...
22/01/2026

Well we've arrived and are now all settled in.
Trip up to Bristol was fairly uneventful minus the hour delay because of a jumper on the line... (hope they're ok). So eventful that kaitlyn had a nap.
Dinner was her first priority of course so was very pleased when they gave her a spud with cheese and beans ( a Mia.... if you know you know).... every teenagers favourite at school!
Then brotherly sisterly cuddles before Brendan and Thomas went to their digs for the night.... and now all settled and ready for our big day tomorrow. Stay tuned all! Now comes the fun part!

20/01/2026

Essay warning!!!!

Alright everyone.... I apologise for the lateness of this post but I think my only explanation is that we'd all kind put this day in a box and labelled it "its ok its ___weeks away yet!" Not really paying attention to the fact that the number of those weeks have been counting down exceptionally quickly.... only to now be faced with said box needing to be opened in less than 4 days.

How are we all feeling about this.... honestly.... I dont know. In my job i always talk to children about feeling all the "big feels" and every emotion in the colour chart being felt at once is normal and ok.... its different when its you and you need to be the strong one. I cant isolate her from this. I cant protect her from it.... she just feels it all. We all do.... and I have to show that she can do this by not showing how worried I am or how scared we all are for her.

We travel to Bristol on Thursday for an operation that will not only change her life but all of out lives for the better. Thank you all from the bottom of our hearts for your support thus far. Please keep Kaitlyn in your prayers and thoughts this week and we will keep you posted on her progress.

26/11/2025

⭐️Kaitlyn update⭐️

Right peeps.... drum roll please 🥁

23rd of January is D-Day!!!!

We did it! I cant believe we did it!!!

We are still so very much in shock that we FINALLY have an end in sight but its most definitely a brilliant day and I'm so pleased you are all on this journey with us. Stay tuned for the next step!

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