Wow I can’t believe it has been since January that we’ve given a blog update on Ava! She has been so busy we just haven’t had the chance! The great news is that since our last post Ava has gotten sooo much stronger. She’s hardly that same little babe that was just learning to hold her head up over the winter holidays. Ava now sits up independently for more time than we can count. She wears a brace for spinal support but her overall core control keeps her in that upright position. She holds her head up all day long on her own. And her vocabulary boomed…she talks in pretty much full sentences already, her doctors told us SMA kids were smart but we’re floored![...]
Happy New Year! We were so happy to spend all the 2018 winter holidays at home and with family instead of inside hospital rooms.
Ava has improved by leaps and bounds since our summer update. She's growing stronger through continued occupational and physical therapy sessions. We've stopped going to Children's Specialized Hospital and instead opted for in home therapy to avoid cold / flu germs. From her continued therapies she's now gained head control and is able to sit independently for several minutes! The head control alone was an amazing milestone but now seeing her sit up and play we can hardly contain our excitement about her progress. It really shows how miraculous Spinraza is and how hard Ava is working to succeed. She's continuing to inspire us every day. [...]
Ava has done so well this summer! She’s been increasing strength through physical and occupational therapy both at Children’s Specialized Hospital and at home with family. She has shown huge physical Improvements since our last update, she’s able to hold her head on her own for upwards of 5 mins! Rolling from back to belly and back again is a breeze as is turning her head side to side, reaching and kicking. Her core strength is constantly improving and we are beginning to see the possibility of independent sitting in the next few months. [...]
It has been a while since our last update but Ava has had a busy summer so far, full of fun, positive, activities. She was at Morristown Hospital for 10 days in May fighting off rhino enterovirus. For Ava, 10 days is a short stay and we are very excited at how quickly she bounced back from this respiratory infection. Even better news is that right before we left she was able to receive her 5th dose of Spinraza.
Since then she has been working hard in Physical and Occupational therapy, she recently has been holding her head up unsupported in sitting position for several minutes at a time. She can now roll from back to front and push with her hand / arm to go back. She now has an adaptive life jacket she's been using to swim in pools and the bay...and the bathtub when it's not a great day outside :) Swimming allows her to easily kick or sway her arms and legs and have some independence to move on her own.
Ava is a rock star and we are so incredibly impressed with her motivation and positive attitude. Her next Spinraza dose will be in September. In the meantime we hope to enjoy a sick-free summer with lots more physical milestones![...]
Ava was scheduled to get her Spinraza injection on Tuesday May 15 but, unfortunately we had a small setback and she did not get her fifth dose yet. Ava woke up a bit congested that morning and as we were waiting for her turn to see the doctor the congestion got much worse and she spiked a 104 degree fever. We were already at Morristown Medical Center so went right down the hall to the ER. Ava tested positive for rhino enterovirus, another respiratory infection that presents as a common cold for adults, but can be seriously compromising for an SMA patient. An x-ray also revealed pneumonia in her right lung. She was admitted to the Pediatric Intensive Care Unit again and is under the care of the same doctors as in the fall / winter. Over the last few days she has made tremendous improvement and has been fever free since Thursday. Her spirits are back up and she is playful and chatty again. She is not 100% better yet but she should be back to normal soon, much quicker than last time. The recovery speeds is indicative of how strong she’s getting! Once she’s well she will be able to get Spinraza and get back to her therapies.[...]
Hard to believe we have been home for two months already! Ava’s been so busy we haven’t had a chance to give a journal update. She is doing really well, going back to Children’s Specialized three times a week for Physical, Occupational and Speech therapy. She’s slowly improving as they see more strength in her muscles and quicker movements with arms and legs. Her biggest goals are to get more abdominal / trunk support to help her breath and hold her head up steadily on her own. She’s gotten some cool new equipment already including her GoBabyGo Car and a stander which helps her weight bear through her legs while being supported in an upright position. Children’s Specialized rehab technology is also working on an activity chair for her so she can sit up and play wherever she goes. She is not eating by mouth yet but we should be able to do another swallow study in the next few months and hope to see good results. Ava will receive her next dose of Spinraza on May 15.[...]
I have been a bad aunt/godmother because I have sat on this donation for like 2 months instead of hurriedly getting the money into Cure SMA. I am happy to report that today, we made a donation in Ava's name to Cure SMA in the amount of $327, and a donation to Ava's ABLE account in the amount of $185. Thank you all for your continued generosity.[...]
We are officially going home on Tuesday the 6th! Ava has gotten so much stronger in her two months at Children’s Specialized Hospital that she’s received the green light from doctors and specialists to go home. She will still do out patient therapies through a location closer to home but will get to sleep in her own crib at night.[...]
Ava had surgery this morning to have a gastrostomy tube placed in her belly. This gtube replaces her nasal feeding tube and is how she will receive feeds from now on. She handled surgery, intubation and recovery like a champ. She is staying overnight in the PICU for observation but should return to Children’s Specialized tomorrow. We are hoping that with the nasal tube gone she will be more comfortable swallowing and her speech therapists can eventually get her back to eating by mouth. It should also have a positive impact on her respiratory-wise; without the tube there’s less airway restriction.[...]
No medical news in this post just a few photos! Ava’s still going strong and had a fun week! She celebrated her first Valentine’s Day with crafts and balloons with her new friend Gigi and even had a surprise visit from Dad! She got all dressed up to meet Miss America and was featured in an article about the visit. She got to go outside on the swing and continued pool and car time. [...]