I will answer every question I can, but please remember that our journey and yours will likely be very different... I figured when you said what was affected, it was left MCA - do you know if it was a clot or a bleed? Bee's was a clot. Because it was a clot, they did a coagulation workup on both her and me (to see if I passed something to her). In the report it may identify it as haemmorhagic or ischemic (the territory generally gives it away). Ischemic is usually a clot, and is associated with a complete area along an artery's path. Bee's stroke territory was large, it involved her left frontal, parietal and temporal lobes, and effectively destroyed 1/3 of the left hemisphere.
Did your daughter see lots of health professionals
Bee has a ton of professionals now, but related to the stroke, she saw 2 neurologists (one for epilepsy, one was stroke specific) and she had a gastroenterologist fairly early because she had awful GORD. We added ophthalmology when she was 4 months old as she has very poor vision. She saw OT to make sure we had adequate positioning for her (she developed positional plagiocephaly so we had to be careful about head positioning) and to encourage use of her right hand, PT for her neck muscles and to help with strength, and SaLT because a) the "traditional" speech centre is in the left temporal lobe (and hers was decimated) and b) because her swallow was uncoordinated and she was aspirating. OT worked with feeding as well.
Does your daughter go to main stream schools?
The short answer to that is "sort of" She went to a SN nursery, then started school in mainstream with 1:1 nurse and aide (she had 2 staff to herself, one medical, and one educational). The following year, she was transferred into a fully self contained developmental class, then, for the last 2 years, she has attended a hospital school. Next year, she is beginning her transition back into MS (2 days a week, and will be 3 days in the hospital school), but it remains to be seen if she will be able to cope. She still requires 1:1 nursing, but in the MS class will be sharing an aide next year.
Does she have any problems with her right side.
Yes, if you REALLY look for them. When she was 9 months old, she was diagnosed with hemiplegic CP, but by the time she was 2, her CP was more of a mixed type diplegic pattern (both legs are affected, as well as both arms). She shows signs of spasticity in her limbs, hypotonia in her core, and ataxia. She is showing limb length discrepancy because of the higher spasticity
Does she have any learning problems?
Short answer, yes. She has cognitive impairments. HOWEVER, I attended university with a girl who had had a neonatal stroke, and she was very bright. Learning problems are possible, but not definite.
NOW... this is important... in Bee's case, the stroke was a symptom of a larger problem. For the first 2 years, even though the pieces didn't fit, everything was blamed on the stroke. Then, when we moved and she ended up under the care of a new team, the fact that things didn't add up came to the forefront, and her new neuro started looking further. The answer wasn't something we wanted (it is degenerative and terminal) but it is important that you don't assume that your dd's journey will mirror Bee's. She has caused so many docs to shake their heads and say "don't know". The fact that your dd is using her hands together is VERY encouraging. Play and being involved with her older sisters will be the most important therapy she can get, both physically and cognitively. Try to avoid the cotton wool - her head is no more sensitive that any other babe her age. The more you protect her, the harder things will be for her when she gets older...
I hope this helps - and will answer (here or privately) any other questions I can.