I feel like we’ve lost two crucial years with Lil Z. Two years where we should have been doing intensive therapy, helping Lil Z to improve her development. Instead, the first year was spent identifying that there was a problem and then dealing with an extremely unhappy, unsettled, sleep-deprived baby once her seizures began. Last year, I wanted to focus on the therapy, but again the medical side of things took over. Between seizures and her gradual refusal to eat, we didn’t achieve much in the way of development.
This year will be different.
This year she will be comfortable enough in her own skin to try new things without screaming and attempting to pull her ears off.
This year we will keep the seizures under control better and keep her in her “sweet spot” for longer.
This year her PEG will take the battle with food out of the equation and let us focus on other things.
This year she will have surgery to prevent her lower eyelashes from scratching her eyes, easing a great deal of discomfort and helping her to see better.
These goals include:
1. Sitting independently.
2. Tolerating longer periods (+10 minutes) in the standing frame, weight-bearing on her legs.
3. Better communication – including using eye contact to communicate and deciding the best means for her to communication (signing, Makaton, iPad, etc).
I totally believe that we can achieve these goals. Why? Because after two years, things are finally beginning to fall into place – just a little bit. Lil Z is making significantly better eye contact. She’s gurgling and chirping, letting us know when she is happy (not just when she’s angry/sad/frustrated). She has the attention span to read three books before bed. And this afternoon, she looked her OT straight in the eye and gurgled. Her OT is a particularly lovely person and has been working with her for over 9 months now, and this is the first time Lil Z has initiated interaction with her.
And we got our FECS schedule for Term 1 and she has an intensive line up of OT, Physio and SALT sessions. Add to that the fact that she is doing weekly private physiotherapy sessions this term. And add to that she will be going to Red Hill Special School for playgroup once a week, where she will do OT, music and hydrotherapy. Plus her FECS physio also works at Red Hill, so will work with her during playgroup as well as during her FECS sessions.
When all is said and done, most weeks Lil Z will have OT and SALT on Monday; OT and Physio on Tuesday; a rest day on Wednesday; private Physio on Thursday and FECS Physio on Friday. And that excludes that with Vegemite at “big girl school” now, I have two days a week that are dedicated solely to working on Lil Z’s development.
So, if we’re going to make progress, it is in 2013. The hip spica has been removed and her femur has healed. The PEG is in place and the eye surgery has been scheduled. Bring on the therapy. We’re as ready as we will ever be.