SMA Clinic at Children's Memorial Hospital (by Lindsay)

Yesterday we took Ella to her first multidisciplinary SMA clinic at Children's Memorial Hospital.


We've done this type of clinic once before at Shriner's Hospital last fall.


In a nutshell, Ella is seen by many (8-10) doctors, nurses, therapists and specialists all in one visit.  Her "team" is able to talk with one another while examining Ella.  


It's a lot to take in (overwhelming would probably be a better word), but nice to see everyone at once and have the team members be able to bounce ideas off of each other.


These were the outcomes of Ella's appointment:

• Ella is doing very well compared to how she was back in January when she first saw Dr. Kuntz (her neurologist).  It seems that her regression has plateaued (yay!!) and that she has even gained some strength back that she had lost (WOW!).  We owe this in large part to her new amino acid-based diet that she started a couple months ago.  The base of this diet is Vivonex Pediatric, but we will now be trying a different formula called Tolerex, which we have heard can have even better results for children with SMA.  Ella's nutritionist couldn't be more excited about how positively Ella has reacted to the new diet!
• Ella's spine is continuing to curve.  Without even having x-rays done of her spine or seeing the orthopedic surgeon (he wasn't at the clinic yesterday), it was decided that she needs a TLSO brace for her back.  This is a hard plastic brace that will be custom made for her to support her trunk, keeping her spine as straight as possible.

The othotist examining Ella's spine.

• It was also decided that Ella needs to be wearing her AFO leg braces while she sleeps (both at night and at nap time).  Her calf muscles are beginning to tighten a little too much and we want to keep her legs in proper alignment.  During sleep, her feet tend to drop more, causing this tightness to increase.

Ella sleeping with her AFO braces on.

• They would like Ella to get Ischial Weight Bearing KAFO braces.  These braces go all the way up her legs and support her hips to help her with standing.  Weight bearing is so important.  
• Currently, Ella has OT and aqua therapy, but they would like her to also be doing land PT once or twice per month.  The aqua therapy is much more beneficial to her at this age (she goes twice per week), but it's still important for her to have some land physical therapy.  
• She will be evaluated by a speech pathologist who specializes in eating to help make sure she is able to effectively chew and swallow without choking.
• She is going to be trying out a couple new masks for her BiPAP, as her current one seems to be causing her discomfort.  We tried a new one a couple weeks ago (the Neotech Cannula), but unfortunately it wasn't giving her the support she needed. 

Trying out her new "Pixi" mask tonight.

• She will be needing to get an adaptive car seat, as her current one doesn't provide her with the support she needs (mainly in her trunk).  
• We have a long list of lab work to be done in the next week or so.
• We will be having spine x-rays taken as well as scheduling an appointment with the orthopedic surgeon who was unable to be at the clinic yesterday. 

Phew!  We definitely got a lot accomplished yesterday, but now we have quite a long to-do list! 


For now, Ella will be going to this multidisciplinary clinic every three months.  So the next time she goes (in August), she will be going to the new hospital location downtown (Ann & Robert H. Lurie Children's Hospital of Chicago)!


Also, just a quick reminder that you only have TWO MORE DAYS to order "ELLAwareness for SMA" t-shirts!!  We have gotten many orders so far (thank you!!) and the deadline is this SUNDAY, MAY 20th!!!  For details, click here.