It’s been a busy couple of weeks since the last post… Maddie’s received some long awaited therapy equipment, had a few doctor appointments, was a flower girl and dressed up for Halloween!

Maddie’s growing so fast we had to order new orthotics (specifically, AFOs or ankle-foot orthosis foot braces) for her because her old ones from this past spring are too tight already!  AFOs help stabilize her foot and ankle (at a ~90 degree angle) to provide a base of support to help with standing and eventually, walking.

Another item that we’d been waiting for months for is her DMO (Dynamic Movement Orthosis) suit, which was recommended by Maddie’s physical medicine and rehabilitation doctor.  The thought is that increased pressure from the snug suit on certain muscles creates more awareness of those body parts.  Although different for each child, we’ve found that for Maddie, the suit definitely helps her straighten out her core/back so she’s able to sit unassisted(!) for longer periods of time.  There are different types of suits, but Maddie’s is a one-piece suit including short sleeves and shorts.  As you can see below, she’s sitting on her own!

Another benefit while wearing the suit is that she’s able to focus more on her vision and fine motor skills because she’s not working as hard to sit or stand to stay midline.  See picture below for her using her right (non-preferred) hand to play with her piano toy while in the stander.

One downside of the suit is that the pressure of the suit creates some reflux so we have to be careful when we change her into it (at least 30 minutes after a meal)!

Even without the help of her suit, Maddie’s head control has continued to improve.  She’s able to keep her head in midline more frequently than before (see below).

As mentioned above, we’ve been focusing more on helping her purposefully use her right hand and food has been a great motivation (no DMO suit required!)  See below for her eating some cheese with her right hand!

As a follow-up from her first appointment back in April, we recently visited Maddie’s orthopedist (bone doctor) to make sure she’s not developing scoliosis due to her delays in sitting/standing/walking compared to someone her age.  Maddie was extremely cooperative for her x-ray and there were no concerns so we don’t have to go back for another 6 months!

We also visited the neurologist recently.  He was able to see one of Maddie’s episodes first hand and wants to switch her current anti-seizure medication to try and better control the episodes.  We’re not sure that the current medication has any effect, so we are going to decrease the current medication she’s on to make sure there’s no change in seizure activity before we slowly transition to another medication (a pre/post A/B test as Bill would say).  We will call him in one month to report and will keep you posted!

To end, here are some recent fun pictures:

Smiles, smiles, smiles!

Napping with Bill…

Laughing while Abby and Bill are screaming/chasing each other around…

Flower girls at my sister’s wedding!

Riding on Bill’s back while apple picking!

Dressing up for Halloween…

And lastly, our little Redskins cheerleader!