This year has just flown by and we wanted to give everyone to do the highlights so far. Maddie just turned six in August and looking back at the past 5 years she made so many improvements. We’re very grateful for all of the doctors and therapists and caregivers and family who have helped us through this process. We are extremely grateful for everyone who’s kept us in their prayers.

The biggest change for Maddie has actually been the addition of a new baby brother in February! We didn’t know how she would adapt but it’s been amazing to watch how she’s become aware of another child and the need to be careful around him.

At the beginning she didn’t seem to understand why this new stuffed animal could move and cry. But as the months went by she seemed to naturally know to be more careful around Samuel, never kicking or flailing when she could hear him nearby. She’s also really good when he comes over to grab her hair or take one of her toys. She just slowly rolls away. She hasn’t quite learned to share her toys yet but she doesn’t seem upset when he does take one.

It’s been amazing to watch this and it has put to rest some of our fears about how she would interact with a new child.

Physically, Maddie has improved quite a bit over the course of the last 9 months . She’s able to push up onto her knees in order to access toys and things on the sofa. Her balance has also improved and we’ve purchased different types of rocking and balance chairs. She can roll to her side and push up with her elbow into a sitting position quite easily.

We also got her a small scooter/cart toy and she was able to scoot around. However, it’s a bit too unstable for her so after initially enjoying the freedom of rolling around the house, she started crying when we put her on it. So now we strapped Samuel’s feeding chair to it and push him bumper car style around the house.

In the spring we also went back to the doctor’s office to get her a new cast for updated orthotics. She’s improved so much they are now only ankle high and allow for a lot more mobility. With them on and with Maddie in the proper mood, she can hold on to something or someone in stand for a minute or two.

Her favorite activity has always been sitting in a swing but having grown to over 50 lbs, the safer mass market swings no longer fit her. Bill built a small wooden chair and converted it into a larger swing. So far it’s held up and gives her some outside time when it’s too hot to go on a walk.

Cognitively we’ve seen her to start developing preferences and expressing them. She’s starting to anticipate different activities based on where we put her or what type of clothing we put on. She knows that putting her on the couch and turning on the music usually indicates that we have to go do something and she’ll be left alone, which leads to crying. Similarly, putting her onto the cart chair and opening the screen door usually means she gets to swing, which usually leads to a big smile. This also has unintended consequences when we put her on the cart chair to go somewhere else and she is disappointed, which then leads to crying.

Towards the beginning of Nov, Maddie has also started pushing herself up from a kneeling position to standing! She does this by slowly crawling/rolling to Samuel’s playpen and then grabbing the top bar to pull herself up. Here you can see her successfully standing up and draping herself over the top in an attempt to climb into the pen!

Medicine wise, we haven’t changed much for seizure medication, but in the past couple months she has started developing smaller single twitches. This follows the same pattern as the previous steroid treatments. The seizures would go away for a while and after a year or so it slowly returned. The current series has been much slower and fortunately she doesn’t seem to mind them yet. Once they develop into stronger twitches or multiple, we may have to go back to the neurologist to test and potentially start another steroid regimen.

We’ll end with some fun photos from the whole year: