July – celebrating achievements

Every month we have a special thread in our closed support group to share and celebrate the milestones (and inchstones) that our children have achieved. Today they were just so lovely I asked for permission to share some. These little warriors just quietly keep on trucking despite their challenges. Heartwarming!

It’s hard to know what to choose with Henry. I am aware that we have been so so lucky. He has been spasm-free since 28th Feb, off steroids since 24th March. Since then he has learned to roll, crawl, cruise, walk, clap and is babbling and making pre-speech sounds. He was one on 11th June and is basically doing what he ‘should’ be for his age. All tests have so far come back normal. I am cautiously optimistic about his future. He is an amazing little man 

Tia had infantile spasms as a baby which progressed to complex epilepsy.. she was having 100s of seizures a day…. We recently celebrated 6 month seizure free 

there is hope for everyone 

Big achievement for this little lady. Holding things in two hands this week (Evie, two next week ) massive for us after our tough week.

This month Forrest (almost 2) managed to get a spoonful of yoghurt into his mouth for the first time. Nursery have been fantastic at working on this with him as part of his IEP

New AFO (ankle brace) and new Billy’s (boots) With his walker being discussed which is a big step for Walter.

Leo. After about three months of not even wanting to touch a spoon he finally put one in his mouth 

This gorgeous little boy had physio on Friday and she said he’s now taking weight well on his leg on his effected side and, with practise, he can start to step. With lots of support he managed 3 steps towards me  couldn’t be more proud xx

Matilda was star of the week at school last week. We are all very proud of how hard she is trying. And she got 3/5 on her spellings which is a MAJOR achievement for her! 

Jack’s now 1.5 years seizure free, post hemispherotomy (surgery to disconnect one half of the outer part of brain) and beginning to pull himself up stand . He doesn’t quite have the balance and forgets to go onto his knees first but hoping extra practice and splints this month keep him on track to walk by the end of the year 

We’ve had our first reduction in keppra in 2 years, and after a very tough handful of days, Abby is full of smiles and was giggling the other evening 

Chloe has had a rough few months and she’s now on an intensive regime to try and stabilise her respiratory health but she literally never complains, always has a smile for us. She is also very settled in nursery and making some small improvements with her fixing and following and you can see she’s trying so hard to focus on objects and people. So proud of my little warrior xx