This week we experienced a minor setback in Ava’s progress. She had a swallow study to confirm whether or not she was aspirating while eating - getting food or drink into the lungs / respiratory tract when swallowing. Ava ate and drank foods of different consistencies under X-ray so the doctors could see exactly where the food went when swallowed. Unfortunately it was determined that part of most things swallowed was going into her lungs as her swallow muscles are not yet strong enough to control where food / milk is going.
Speech therapy will continue to work on strengthening these muscles but for now she will not eat by mouth unless under their supervision. All feeds will go through the nasal feeding tube instead. Hopefully with the Spinraza, these muscles will get stronger and she can go back to enjoying all of her favorites over time.[...]

Ava’s continuing to make great progress at Children’s. This week an occupational therapist working with her in the pool commented that she’s a “therapy dream” because she is so motivated to learn and tolerant of trying new moves and positions to make her stronger.[...]

I'm very excited to update you on the Ava Bracelet sales. Because of your generosity, we made a donation of $164 to Cure SMA this afternoon (for a total of $464 over the course of January).[...]

Yesterday Ava received her fourth Spinraza injection! This completes her initial dosing phase so she will only receive maintenance injections three times a year going forward.[...]

First of all, thank you so much for the bracelet donations and the food from the meal train. I can’t say it enough how thankful we are for the support from our family and friends. [...]

Hi everyone! Ava's Aunt Lisa here. Thank you to all of you who have reached out to buy your Ava bracelets. Our second case has finally arrived and I have all the outstanding orders in the mail on the way to their new homes. I've already ordered another case because it seems to take about 2 weeks for it to arrive, and that seems like a million years since I'm an Amazon Prime addict. :)[...]

Ava is now hanging out at Children’s Specialized Rehab in New Brunswick where she will get longer hours daily with her respiratory, occupational and physical therapists. We miss our PICU friends in Morristown, and cannot adequately express our gratitude to the staff there. But we are so grateful to have more time with the therapists here, which hopefully will result in a more rapid improvement for Ava.[...]

Because of your generosity and support, we sold our entire case of Ava bracelets in less than 2 hours of the post! We have sold a total of 46, and we have another case on the way with more orders pending.[...]

Hi - it's Laura's sister, Lisa, again!

I bought a large box of Cure SMA wristbands (we like to call them Ava bracelets around here). With Laura and Dan's permission, I am selling them for $5 per bracelet and donating 100% of the proceeds to Cure SMA in Ava's name. In a nutshell, Cure SMA is an organization that funds research into treating and curing SMA, and provides support to SMA patients and their families.[...]

Laura asked me to post the following link to an interesting article on gene therapy forwarded to her by Jessica Bolton (Thanks Jess!). Gene Therapy will likely be the next FDA approved treatment for SMA and this gives a little insight into a recently approved treatment for genetic blindness out of Philadelphia and the positive outcome from the research they did. [...]