07/17/2026
Not our normal content but a little life update. We have been a little quiet on this page lately and this is why. We have been trying to cram as much summer fun in before surgery as we can!
If anyone is looking for a way to support us please think about purchasing an item from the shop. I will be taking close to a month off from my job and any extra funds would be incredibly helpful!
This cutie patootie cool kid is have major surgery in 13 days.
Over the last few years the orthopedic doctor on Sirus’s case has been talking to us about the possibility of hip surgery. The first time he brought it up I could not fathom Sirus going through that but at each appointment he would share more information on how it could be helpful. Flash forward and the time has finally come. Sirus will undergo surgery July 30th where they will remove his femurs from each hip socket so that they can reshape the socket. They will then put his femurs back in place and then the long healing process begins. He will spend a few nights in the hospital and then head home where he has an expected recovery of 4-6 weeks.
We have had a lot of people asking why we would do this and the easy answer is “QUALITY OF LIFE”. Currently both of Sirus’s hips are partially dislocated. This dislocation has caused is posture to change drastically, he can not lay down flat on his tummy, he can not properly weight bare in his gait trainer to walk, and it has rashes and painful raw skin in his groin because the area is so compressed. 5+ years ago there would be no need for this surgery because children and adults with SMA were most often not ambulatory. Now through the amazing medical interventions such as Zolgensma and Ridisplam doctors are not only seeing slowed regression but maintained muscular strength and new milestones being met.
As Sirus’s parents all we have done since his diagnosis is fight for the absolute best care for him and to ensure he is living his life to the fullest. Sometimes those moments are easy and sometimes they are hard. This is definitely one of the harder choices because we know the pain and healing is gonna be hard. We know that he will have intense physical therapy that is going to be full of tears and frustration. We know that he is most likely going to miss the first few weeks of school. However we can confidently say that we would make this same decision every time.
Now for some more exciting news amongst all the stress and preparation. Sirus’s birthday is 3 days after his surgery. That part isn’t so great and he will probably still be in the hospital. But…to make his birthday feel special in such circumstances we are asking for those that are interested to shower him with birthday cards, or cards of encouragement as he heals.
For anyone interested in sending a card please leave a comment and we will get a mailing address to you.
