24/08/2024
17th August - 23rd August
Our first week back from holiday was a tough one. The days went so slow but at the same time It felt like our safe space and I knew that Iris was in the best place with everyone that needed to be close to Iris all in one building .
Iris had to be sedated and have Botox put in her muscles on her left arm her hand, fingers and thumb and left leg her calf and into her ankle . This is to relax the muscles that have built up spasticity and that would claw and be very stiff. Iris was very brave but this made her very emotional and upset when she came around from her sedation. She done so well and won't remember the stress she was out through at the time 🥴❤️. The Botox won't take full effect for upto two weeks and will last about 6 months.
Iris has been using a "tickle machine" on her lefty shoulder. This is a machine that sends electrical signals through certain areas to encourage the brain to remember the signals from her lefty arm to her brain. We haven't had much movement with her arm so far and most of the movement she has is coming from her shoulder and trunk. ❤️ We will continue this to encourage the signals to be built in hope she will get some movement back.
Iris has been working really hard this week with her standing and walking. We still have a very long way to go with this but she is working so hard it's absolutely incredible. We are allowed so proud of her ❤️❤️
Iris has been weaned off of her Keppra (seizure medication) no so we need to be on high alert as there is a strong chance she will get epilepsy as the scarring continues to her brain damage 💔🥴.
SAVING THE MOST SCARY BIT I GUESS BEST BIT UNTIL LAST 😬🫣🥴.....
On Thursday The Doctors came around to discuss with me that as of Friday 23rd August Iris would be considered an outpatient. (This means we are now allowed to sleep at home and go in daily for physio, occupational therapy speech as well as on going scans meetings ect.
As much as it's an absolute incredible thing to be happening this was also heartbreaking. 💔💔
I am absolutely petrified not to have all the special incredible people that have been with us daily around when we need them. But am so happy we get to carry on with the new "normal" for us. (Iris unable to walk, stand, crawl, sit on the toilet unaided ect)
Getting to spend time with all the people we love the most ❤️❤️❤️
We will still be in hospital daily mid week for the intense physio to see how much Iris can learn and the strength she can gain back as the scarring continues 💔..
I will be spending the coming days making our home as safe and suitable for Iris as possible for her ❤️ and I am able to do this with your generous donations on the raffle and go fund me so thankyou so so much ❤️ without you all things would be so much harder.
This conversation I had with Iris broke my heart whilst we were waiting to be collected 💔💔💔
Mummy "Iris we get to stay at home in our own beds from now on and go to the hospital to visit"
Iris "we get to stay home forever?"
Mummy- "yes is that good?"
Iris went silent for a minute and this is what was heartbreaking the most 💔💔
Iris "but what about my walking mummy?"
Mummy "what do you mean baby?"
Iris "I still can't walk yet"
😢😢💔💔
We had a lovely family evening last night chilling with a movie and pizza (and of course a pile on 🥴🤣)
Leo has gone away with his daddy this week and Iris has had a night away with her daddy and brothers which she always loves 🥰
As much as we are excited for the next chapter we have no idea how we are feeling ❤️🥴 but with all your love and support from our families friends and the hospital I'm sure we will be just fine. 🎉❤️🎉 (Other than the expensive daily hospital parking 🥴🤣😬)
