We welcome a new year fresh with positive vibes and good thoughts. Last year was so hard and we didn’t get to update. We finally had spinal fusion two rods and successfully got through it / 8 days on life support before we decided to breath on our own and 6liters of blood loss but all good.
Hips redone and bones healed.
Epilepsy on the other hand has been the naughtiest !!!! Daily seizures. And a new non convulsive status we hadn’t seen which was happening almost daily – very frightening but thankfully at the time we were in hospital. It was one of the main reasons spinal surgery was cancelled three times plus the lovely melena – internal bleeding we seem to get.
Since the last bleed I decided to change things myself. I took her off omeprazole and changed her to infant formula A2 milk
I had been reading up about long term ppi use and how it actually can cause bleeds. Anyway after a month we had a review and changed her to peptamum junior formula which has the correct vitamins etc in it for her age and is for kids with absorption issues. It’s been a great success.
Since spinal surgery things have changed so much for Ava. She is now moving her hands and arms a little more and starting to try stretch. Super small moves but huge for her. She can suck on her thumb at times and can hold a toy above her head.
She has also started to wee again. Just shows how much her spine was responsible for so many aspects Inside her body.
She is a lot happier in her self and not on any heavy pain relief. She is stiff some days and still had bad days when she is seizing and needing cpap 24/7
But on a good day we usually try get out of the house for a couple hours. She loves people and being involved. Still laughs at everyone and everything.
I notice people stare more as she is getting older and I would like to say “hey just say hello”
Be kind – teach your kids to just say hi
Anyway this year started off well and we pray it keeps on keeping on well.
Wil is now 7 and he is having a big year with school and learning assessments etc
We always knew things would be hard for him. And now I have met up with a lovely lady that helped me with M when she was little and she is helping me get things happening for wil now.
Funny how the world roles. Just feel so humbled to have found a decent person again to help.
I will say life truly is a juggle with an 18,15,9 and 7 year old
Til next time x cheers to you all