She's Vertical... and Bigger! (by Lindsay)

This past Tuesday (11.15.11) Ella was evaluated and fitted for a "stander". This is a piece of equipment that holds her in the standing position, so she can bear weight, which is so important for a child with SMA.

Weight bearing helps increase bone density as well as improve respiratory health, two essentials for children with SMA.

The process for getting Ella the stander is very similar to that of getting the power wheelchair... first she is evaluated and her physical therapist and the vendor decide on what will work best for her needs. Then the letter of medical necessity is written by the PT, which is then given to Dr. Murphy (Ella's pediatrician), who then signs it. The letter goes back to the vendor, who then submits it to the insurance company. And then we wait for approval (hopefully). But this process takes a long time... the letter of medical necessity for her power chair has yet to reach the insurance company (and she was evaluated over 5 weeks ago - we were told that part would take about 2 weeks).

The stander that was decided upon is the Bantam "Easy Stand". It has a sit-to-stand feature as well as a tilt feature. It comes with a large activity tray as well. This stander will also allow Ella to push right up to the kitchen table for activities.

The vendor was kind enough to let us keep the Easy Stand that he brought over for a couple days. Ella's PT said that the goal is to work up to 2 hours of standing per day (not all at one time). The first day, Ella stood for a total of 2.5 hours! She even did her entire OT session standing!

I have to say that I was really concerned about how I would feel seeing Ella in this "contraption".  But it had the opposite effect... seeing her upright and vertical, standing like any other 1-1/2 year old was incredible! And she was so happy!

It is definitely a larger piece of equipment...

Getting everything into position for her to stand.

Playing her iPad

Such a big girl!!

Sitting at the kitchen table.

Standing at the kitchen table.

The clear activity tray helps with her spatial awareness.

Speaking of large... Ella had her monthly dietician check-up yesterday, and she's gained 1/2 lb.! Woo hoo! She really hasn't been eating much for the past couple months, so the dietician suggested that we supplement with PediaSure. Luckily Ella LOVES it and has been drinking up to two 8-oz. containers every day (which is almost an extra 500 calories per day, plus a lot of important nutrients!). We've also noticed a big improvement in her mood and energy levels since we started supplementing :) We're going to try some more aggressive measures to help her GI issues (namely constipation), hoping that will help her build up more of an appetite for solid foods... stay tuned!