Since my last blog, Chelsea has attended Hydro therapy, Physio therapy, ECDP Special Kiddies Kindy, GP appointment & a specialist Neurologist appointment about the Ketogenic Diet.
Hydro was good, Disability Services provided a physio therapist & occupational therapist who did group activities and showed us how to do water physio activities, things we can practice at home or in our local pool. Chelsea had a smile on her face the whole time she was in the water, photo below.
The Physio appointment was great, we brought a special weight belt that we put on Chelsea, it helps her sit up straight and balances her out better. On her knees, holding her by the belt she can do little 10 sec stints at holding herself up. We are working on her upper body strength so that soon enough she will be able to hold herself up, ready to crawl. This physio appointment & weights was paid by Chelsea’s Sunshine Butterflies account, money that family and friends have given us to help Chelsea reach her full potential.
Special Kiddies Kindy / Playgroup is for little ones under 3, every Friday we attend a 2hour session. With a fantastic special needs teacher there is free play time, morning tea time and music therapy. Which all the kids who attend absolutely love, they are so engaged and happy listening and trying to copy actions that the teacher and parents do. (Chelsea doesn’t know yet how to clap her hands, wave or stand. But I sit behind her during the music therapy and help her clap, wave her arms, touch her head, shoulders etc.) Attending the playgroup is great for the children and parents! Doing activities listed above gets Chelsea ready the next step – Pre-Kindy ages 3 to 5. This is for special needs kids and it gets them ready for Kindy, so there not thrown in the deep end and will hopefully be more at eases in the transition starting Kindy.
GP appointment was because Chelsea got the flu from Hydro. My main concern was the chance of increased seizures, as it is common for her to increase seizure activity with the flu. But to my absolute amazement still no seizures!
At the Mater Children’s Chelsea, Trent & I attend an appointment to talk about the possibility of Chelsea starting the Ketogenic Diet (Keto Diet). So the Neurologist and Dietician where both very helpful in explaining the main components of the diet, Chelsea is a candidate for the diet as her infantile spasms often respond well to the diet. (OMG this is great news I was so happy inside to hear this, this is a fantastic opportunity that I want Chelsea to have. The possibility of being weaned off her anticonvulsants & seizure free! I am willing to do anything to give Chelsea that chance! Yes Please where do I sign up! ) Well the diet can being once she starts having seizures again. At this point Chelsea has gone 22days straight with no seizures, the Neuro was speechless. SO the diet is on hold if and when Chelsea begins having seizures again. (It is a lot easier to continue giving Chelsea medications and eating what she likes VS strict calories counting, high fat, low carb low protein diet, so I’m happy to wait if the time comes)
Chelsea is on world record turf here – she had 10days no seizures 4days with a few little ones and now she is up to a further 23days straight with no seizures. She is a lot more responsive, alert, happy, and making developmental progress! What a great start to the year.