Hiya
My 2 year old Daughter has spastic diplegia. She is looking like a level 2 or 3 on the GMFS but it's too soon to know for sure as she is still developing.
Has your daughter had an MRI to diagnose? Do you know the cause? My daughter has a form of brain damage called periventricular leukomalacia (PVL) Which occurred shortly before birth - she was 9 weeks premature.
My daughter learnt to sit at around 14 months, crawled at 17 months, walking with a Kay walker at 30 months (needs guidance and supervision in it still) and has just started cruising at 34 months. She wears night splints, has orthotic boots and a mini wheelchair (we opted for wheelchair rather than adapted buggy so she might learn to self propel).
Although CP mainly effects her legs she also has some fine motor delays which is common in kids with diplegia- we work on this a lot at home with lots of fine motor learning play. It's an area I didn't really worry about until about 6 months ago I focused so much on gross motor development and physio and then I realised how delayed she was with fine motor too so started incorporating more of that into our daily at home play and physio sessions.
Usually (when not in lockdown) she sees a private physio twice a month (our NHS support and provision is very poor - they are good for equipment but not for physio sessions so we pay private). Hydrotherapy once a week, horse riding once a week and Portage once a week and then we do exericses daily. She has standing frame at home which we try and put her in for an hour a day. I would start asking the NHS physio about a standing frame right away if it hasn't yet been mentioned as it's so important for them.
In a very Simplified way, Spastic diplegic CP means that the brain is misfiring signals to the muscles in the legs causing them to become stiff and it therefore becomes difficult to build normal movement patterns. Physio and stretching is really important to try and ensure she doesn't loose muscle length or range of movement.
As your daughter has diplegic CP she may be a candidate for a spinal surgery called SDR, which can permenantly remove the spasticity in the legs. The NHS started doing this surgery in 2017, before then you could pay privately at some children's hospitals like Bristol and I believe you still can if she doesn't meet the NHS criteria. It's very narrow and strict criteria in the NHS - for example they must be diplegic, not have dystonia, they must have enough strength and ability that independent walking is deemed achievable.
The surgery can't be done before the age of 3 on the NHS but it's worth asking her neurologist and orthopaedic consultant about.
Just before lockdown we heard that our daughter is likely eligible for the surgery on the NHS and was being put forward for a formal assessment where they will decide. If not we will look into doing it privately. It's a remarkable surgery which has had amazing results for so many children with CP. there is a Facebook group where you can follow children who have had it done.
I hope some of this helps happy to answer any questions. I don't know if it helps but my daughter is very happy, very funny, she's extremely chatty, her speech is well ahead of her peers and she's bright as a button and extremely
bossy! She does have some delays outside of gross motor but she's catching up, it's to be expected as they don't get the same opportunities to explore the world and learn as other children do so it can take them a little longer. It's maybe worth mentioning she does also have epilepsy and it is more common in children with CP so be vigilant - no need to be over anxious though, just aware. My daughters seizures were initially a form of epilepsy called infantile spasms which were very subtle but she's been seizure free for a year now!
I know it's scary and daunting and can feel incredibly sad when you get the diagnosis but honestly life will be great and she will amaze you!