Millie was born 9th September 2021, around Christmas/January time we noticed that she wasn’t using her right arm half as much as her left. After numerous doctor visits we were referred to a paediatrician. However, in March I noticed she was doing some unusual movements, a bit like she was being made to jump and these would continue for a while. After a good old Google search I found the UKIST Facebook group. It was invaluable! After some advice and a noticeable increase in the movements, we went to our local A & E department with lots of video footage of the spasms. Fast forward through the weekend and Millie had an EEG which diagnosed her with infantile spasms. It was scary, heart-breaking and emotional but (fingers crossed) with vigabatrin and steroids the spasms were soon under control. It feels a bit of a dream now the time through the meds, the hunger, emotional stress for her, weight gain and the feeling of missing your baby from the lack of smiles and interaction. However, this was just the start for our gorgeous girl, after an MRI we found out the devastating news Millie had unfortunate suffered a perinatal stroke. It’s a long road to recovery, lots of milestones missed/delayed but she is a little fighter!! We didn’t know if she would crawl and walk but she’s done it! She is the bravest girl and we couldn’t be more proud. Millie has lots of physio and OT appointments but she’s taking them in her stride! Speech therapy next but I know my girl will do her very best.
When Millie was a year old she had only just learnt to sit up, doctors couldn’t 100% say for definite but they did warn us she may not walk. Roll on a month after her 1st birthday and she crawled – she wanted desperately to get to an orange ghost flashing Halloween decoration! We continued with physio and occupational therapy and then at 19 months old Millie took her first steps! She is still a bit unsteady especially when she is tired but she is doing incredibly well, we cant put into words how proud we are. We went to see her consultant not long after and he even wrote down on her notes Millie did some dancing and squats! Something which me and her dad worried would never happen.
Millie also started nursery in January which has been amazing for her, she’s picking up new words every week. When we first went in we explained about infantile spasms to the SENCO and her key worker then Millie took her infantile spasms book in on world book day ❤️
Thank you to UKIST, they have honestly been the most supportive group of people and don’t know if I would feel as strong without them! She is now such a loving, funny, dancing queen 2 year old! Sending lots of love to all of your gorgeous little ones! Love Kelly & Millie x
