Will you be Sloan’s Valentine?
It is hard to believe that our last update was after Thanksgiving! Time has flown by since being home, but we cherished every minute of Sloan’s first Christmas, New Year and a milestone birthday for Daddy.
Since then, Maggie and Willie have been laser focused on Sloan’s care and trying to juggle keeping up with their home, work, treatments, appointments, calls, scheduling, supply battles and generally just getting through our Chicago winter. It has certainly been an adjustment transitioning from hospital to home life. Nursing hours were approved, but finding consistency especially during a pandemic is still a challenge and honestly could always be. Maggie and Willie have been reliant on family support to fill in the gaps and just to keep up with daily tasks. Everyone is more than happy to help, but it is very complicated with Covid still very much a concern that would most certainly be life-threatening to Sloan if she were to be exposed. We’ve recently been made aware of devastating news that some other children that have received the gene therapy after Sloan have gained their angel wings and so we’re all rededicating ourselves to being extremely cautious and not taking any chances when it comes to Sloan’s health.
Sloan continues to be the bravest warrior we know. She visits Lurie’s every other week for ERT and Mom and Dad take advantage of the hospital setting to change Sloan’s trach while there. No matter how many times they’ve done the change, it is very nerve-wracking to remove the old trach and quickly insert a new one. They have all her home meds and treatments down too - there are many! She has good and bad secretion days and those days where they are just relentless and uncomfortable are the absolute worst. Sleep is still a bit of a challenge for everyone, but we’ve seen a significant improvement since coming home from the hospital. For almost the first two months of being home, Sloan needed a heavy dose of melatonin to fall asleep - and staying asleep was a whole different issue. Now she’s sleeping well through the night for about 8 hours, which is fantastic progress except those pesky secretions keep Mom & Dad suctioning her throughout the night still. Fingers crossed her sleep continues to improve and a nap schedule is somewhere in her future!
As we’ve shared before, the suction machine is really loud and when Sloan’s secretions are nonstop we can only wish that technology for home health care can make some serious progress and get the attention it so desperately needs! Her little ears have to be tired of hearing the machine that sounds like a lawn mower and makes everything vibrate in the process. We worry about the long term damage it may have on her hearing. Aaaaaand, for being a portable machine, it only lasts about 30mins unplugged before the suction starts to get weaker and won’t last more than 60mins before it goes dead. This scares Mom and Dad every car ride to Lurie’s! We scour social feeds of other families of medically complex children and adults for ideas and what others have paved the way for us to learn from them. If there are any tech engineers out there, I have ideas!
Our next big hurdle is getting Sloan’s developmental therapies established. It’s been a very slow process getting through the system, but she really needs to get PT, OT, speech, etc. going to gain back the milestones she lost. She communicates in many small ways, but she just recently started smiling again and it’s an understatement to say that it warms our hearts and we are overjoyed every time she does! She still only has eyes for Mom & Dad and is happiest and calmest when she’s in their arms.
Today is all about love and we continue to share all our Love for Baby Sloan! Maggie and Willie miss seeing you all in person and hope that one day Sloan can wean off the immunosuppressants so we all can feel more comfortable gathering together again. In the meantime, please keep Sloan and the Calderon family in your thoughts and prayers, or send a Valentine note - they’d love to hear from you! And up next, we can’t wait to celebrate our favorite season of all things Irish and more firsts for our baby girl!
Xoxo
Aunt Moira
